I don't know about you but for me, I connect with people most when I know their story, and when I share mine. If you know me, you probably already know my story because I live my life like an open book...my English friends might say I live it a little too openly but the American in me can't really help it! Or maybe it can and I just choose to live that way. (Sorry English friends!) By telling my story, I am in no way attempting to single myself out, to ask for sympathy or praise, it is simply so that you see the human in me and to understand a bit more of who I am and where I have come from. So you trust me when I say it has been one hell of a journey so far- amazing at times, harrowing at others- and I want you to know, most of all, that you are not alone. WE are not alone. We need each other. And if only ONE person reading my story finds comfort, my mission will have been successful.
Anyway...
I thought it would be nice to introduce myself a bit more and share a bit about myself over several posts so you understand who I am and why I have chosen to take on this challenge. I don't know why that matters - only, there's something about being REAL with each other, being open and vulnerable and in our true human form that connects us to each other. I dunno, maybe I've just had too much coffee.
ANYWAY...
Hi!
My name is Cindy. I grew up in Austin, Texas and moved to England (by myself - sorry, Dad and Katie) when I was 22, shortly after I finished University, or college, depending on whether you're reading this from the US or the UK. I am the mom of four gorgeous, smart, funny, LOUD boys and even though I'm in my early 40's, the most grown up I've ever felt was when I purchased a sofa and matching armchair. Go figure.
My journey with Huntington's disease began in 1996 when I was 17, a memory I can recall as clearly as though it happened just this morning. It was my senior year of high school, September, and I was in the early stages of preparing for university- memorising monologues and songs for scholarship auditions, confidently dreaming about what life would be like as an 'adult'. It was a Monday morning and before my sister and I left for school, our parents said they had something to tell us. We had never heard of Huntingon's disease before. We didn't know that they had driven to Houston three weeks previously for mom to have a genetic test done. We knew that our grandfather, who passed away before we were born, had been sick for a long time before he died but that no one really understood the root cause of his illness. He had been in and out of veteran's hospitals and had been diagnosed with a variety of different ailments, so much so that when a postmortem diagnosis of Huntington's was given, no one really paid
attention. At the time, no one really understood it and got on with the business of mourning the loss of a much loved family member. That September morning, a photocopy of my grandfather's autopsy lay unfolded on the kitchen counter, 'Huntington's Disease' staring back at us in faded type. Our parents were going to see the family doctor that afternoon to get the results.
I don't remember much about that day other than the feeling of complete shock when later on that afternoon our parents told us that our mom had tested positive and that there was a chance that both my sister and I could also carry the gene. 50/50 chance they said. The internet didn't really exist then. Few people had personal computers. There were no online support groups to instantly tap into for encouragement and advice. We were on our own. I remember my sister asking if she could go see her friend and volunteering immediately to drive her there. After dropping her off, I went straight back to school and into my drama teacher's office. She was a second mother to me and having told her earlier in the day what was going on, she knew by the look on my face that it wasn't good news. I remember her going into the theatre where rehearsals for Thornton Wilder's 'Our Town' were taking place to retrieve my two best friends. We stood in her office and cried. And cried. And cried some more. A world changed forever. Happy, suburban, church-going American family with the rug pulled completely out from underneath us. A 24-hour period in which everything was now different.
I remember praying that night a prayer of anger. 'Goddamn you! GET OUT OF MY LIFE! I don't believe in you! How could you let this happen?! What have we ever done to deserve this?!' And more tears. More anger. More fear. I remember walking into school the next morning feeling empty, a physical loss in the centre of my body. For three days, I remember thinking, 'How on earth am I going to survive with this feeling of emptiness? How will I ever be happy again?' On Thursday, my family was out of the house and I began to cry again, and to pray. 'God, I can't do this. I can't live like this. I can't spend the rest of my life not believing in something bigger than myself. I'm sorry. I'm scared.' I remember walking into school on the Friday and that empty feeling was gone and I remember feeling relief.
I also remember knowing deep in my heart that I had grown up over night. I was no longer a carefree teenager. I understood (as much as a 17 year old can) what it meant to know pain, to know heartbreak, to truly understand the finite nature of our existence.
For those of you who know me, you know I like to laugh. My nieces and nephews (and probably everyone else I know!) call me crazy. I basically have no comfort zone and am a great lover of people. I am a positive, independent (/stubborn?), assertive person who sees life as an adventure. I have always been a leader, in one way or another, and I thrive when I'm marching to the beat of my own drum. I am a songwriter, a traveller, a wife, a mother, a home educator, a lover of friends and good food and a crowded table. (Check out Brandi Carlile's project 'The Highwomen' and listen to the song 'Crowded Table'). I have the fortunate ability to almost always make the best out of shitty situations...
After mom's diagnosis, it took a good few years to not feel so angry. It took even longer to stop secretly holding it against everyone else whose problems seemed so unimportant compared to mine. On the outside, I was still happy Cindy that everyone knew and loved but on the inside, I was terrified. What if I had HD? What if my sister had it? Who would ever want to marry me? How could I ever not be afraid again? And so I poured my heart into writing songs, into hosting parties in my tiny little shed of a house, into supporting my friends through their own challenges, into travelling more, into staying busy in whatever way I could so that I didn't have to feel the fear.
I always knew I wanted to be a drama teacher. Or at least, I always knew I didn't want to be a professional actress and I enjoyed teaching and so I combined the two to forge a career path I would enjoy. My best friend is a painter and studied at the School of Visual Arts in New York City. I had been to visit her a couple of times and loved the city from the moment I stepped off the plane. As our college years began to draw to a close, a plan formed. I would move to New York, teach drama and she would paint. We would live a creative, bohemian life, happily ever after.
The summer after I graduated from college, I worked at a summer camp on the east coast. My plan was to pack my car as full of my stuff as I could, drive to Pennsylvania, be a camp theatre director for eight weeks, and then move straight to New York. It was going to be awesome.
Only, I met a boy. An English one. And everything changed.
Again.
The boy and I made plans. After we both finished our travels, me- a solo backpacking trip around Europe and he, a trip to the Caribbean to study, I would move to London. Why not? As a teacher it was easy to get a job and much less of a hassle trying to get him some sort of visa to stay in America. Plus, it was the chance to LIVE IN EUROPE and as a fifth generation Texan it was an opportunity I didn't want to pass up.
In hindsight, I know now that I was also running away. Not in an I-can't-handle-the-HD-burdens-on-my-family reality and not in a way that meant I wasn't accepting or actively managing the fate that had been dealt us...it's hard to put into words. Yes, I felt guilty at times for not being close by. Many times. Most times. Yes, I missed my family terribly. But I also felt that being in Texas wasn't where my life was meant to be, at least not then. And 18+ years later, I still don't really think that's where I'm meant to be, at least not permanently.
Time moved on and my sister became a wife and a mother, and then a mother again. She built a family while I added extra pages to my passport, both of us, at times, living vicariously through each other. Our individual journeys with HD are exactly that - individual and unique. I couldn't
begin to tell you her side of our HD story and so I won't even attempt to. What I will tell you is that I have never felt as far away as I did on that night in 2004 when she told me that she too had tested positive for Huntington's. I booked the earliest flight I could get and flew home to be with her. I might not LIVE in Texas, but I would get there as soon as I could.
I am obviously leaving out a ton of detail because otherwise we'd be here all week! The parts of my story that I share here with you are simply the ones that have punctuated my existence and have shaped me into the woman who sits typing these words to you today.
So, moving on...
I could be wrong, but if my memory serves me correctly, it seems that my sister always wanted to find out if she was a carrier of HD and I never did. I felt like I had a happy, no, incredible life and I was afraid that a positive diagnosis would change that. I was terrified. So in the meantime, I travelled. I had my heart broken by the boy. I got an amazing job promotion in London and traveled some more. I decided to get tested for HD and then realised I didn't have a strong enough support system around me yet so I stopped the process. I decided I was entirely happy with myself and in my own company and I certainly didn't need a man to complete me when - as often is the case- I met someone new. A musical someone. A GOOD someone. A someone with his own story of adversity and perseverance and not needing someone to complete him and we fell hopelessly in love. We became husband and wife and then parents and then parents again and it wasn't until our second son was almost a year old that the distractions of new job, new destination, new love, new marriage, new parenthood waned and the threat of HD reared its head again.
Reading that back it sounds like I'd forgotten all about it and I can assure you I most certainly did not. HD and all it's hideousness was one of the very first conversations I had with my (now) husband. Over the years we spoke at length about when/when not to get tested. I didn't want to be tested unless my fear of not knowing became a source of unhappiness. We had the same thoughts about having children despite the risk of not knowing whether or not I was gene positive and as a result, not knowing whether or not our children would be potential carriers. (I know the decision of whether or not to have children is a hot topic in the HD community. I hope there is no judgement felt in hearing my story. Likewise, I hope you understand that each and everyone of us has our own decisions to make based on our own individual experiences, and that no one can possibly understand entirely why we make the decisions we do, rightly or wrongly.). As time went on, there were plenty of times fear got the best of me and eventually, I was consumed. Shortly after my 30th birthday, (statistics say HD usually begins from age 30-50...you'll understand why this is relevant in a moment), I started to notice 'symptoms'. The usual happy-go-lucky Cindy was replaced by someone completely overcome by fear. Completely. I had my first panic attack. And then my second and eventually lost count. By this
point my mom was in the later stages of HD and so I had a vivid image of what my future potentially looked like.
I decided to get tested.
In the UK, we have a fantastic national health system (more on my praise for the NHS later on in my story). The process for being tested is, understandably, a long one. Medical professionals want to make sure you understand the potential negative impact a positive diagnosis can have on your future- difficulty obtaining life insurance, mortgages, etc- and therefore it can end up being a six month process. By the time I made up my mind to find out for myself, I knew all of that already. I had LIVED HD. I KNEW what it would mean to us as a family, so we decided that we would have the test done privately. My husband and I met with Professor Michael Patton. He reassured me that, despite my assumptions, I wasn't displaying any symptoms at present and that after a blood draw, we would have the results in 3-4 weeks.
Those three weeks felt like three months until one afternoon, we went along to Professor Patton's clinic to receive the news...
I didn't have HD.
I was not a carrier of the mutated gene.
My children would never have HD.
You know what had happened? My FEAR had caused HD symptoms to physically manifest themselves even though, as it turns out, I wasn't HD positive.
I called my sister. The first thing she said was, 'I KNEW it!' And we cried together and celebrated over the phone, across the thousands of miles that physically separated us. I guess what I haven't made very clear up to this point is how CLOSE we are as a family. Incredibly close. Unbreakably close. For us, as horrific as HD is, it drew us together. My sister is my very best friend and my dad is my hero. And even though they were on the other side of the world, they were with me every step of the way through this testing process. My sister never made me feel bad that our results had come back different. And my dad, bless him, when I told him the good news at 11:00am Texas time, said with relief in his voice and a fat Texas twang, 'I'm gonna' have a shot of whiskey.'
You don't have to do much research to know that Huntington's disease is utterly devastating. It is a destroyer. And despite our rallying 'round each other and the positivity with which we tried
to live our lives, the end of our mother's was heartbreaking. I was pregnant with my third son at the time, just as she had been pregnant with me when her dad passed over.
I'm going to share with you something I wrote then. To me, it sums our experience up perfectly. I've never shared this publicly before. I hope it is ok.
11 November 2010.
Here's a little reminder of what this past six weeks has been like:
We arrived in Austin on the 22nd of November. The day after, Gabriel got the chicken pox-carried over from the UK from when Sam had it two weeks before we left. Sam then caught a cold virus that Gabriel then got then gave to me, we all passed it on to Marin and Griffin who developed Pneumonia. Shortly after Marin got the Chicken Pox.
The weekend before the boys and I arrived in Austin, Katie and her family moved into a new house. Dad is living in an apartment because of the repairs being done in his house because of the kitchen fire in October. The boys, Lisa and I stayed at Dad's house-with no functioning kitchen so did the dishes in the bathtub, ate microwavable meals, worked our way around all of the stuff laying around the house that had been displaced from the kitchen.
We left London with all of our stuff packed in boxes because we were meant to return on the 16th of December and then move into our new house on the 20th. Because of letting agency issues, we weren't even sure until the 17th that we were even going to be able to move in at all. I was not there to take part in the move.
Tom was supposed to arrive in Austin on the 22nd of December but his flight was cancelled because of heavy winter storms. He wasn't able to get a flight out until the 26th so he didn't get to see Mom.
The moments before Mom died, three things happened all at once. Dad woke up, which he never does because he's such a heavy sleeper, and noticed that Mom was breathing differently. He sat down with her on the bed and spoke to her and she took less than 20 breaths before she was gone. At the same time, I awoke because I felt a thud at the edge of my bed. In the split second I realised that it was Gabriel, the phone rang. I looked at the time and knew what the call was about. In his almost three years on this earth, Gabriel has never gotten up out of his bed in the middle of the night and come into our room. And at the same time, on the other side of town, Katie woke up, ear plugs in, to turn the TV off as she'd fallen asleep with it on. I like to think that was God bringing us all together at that moment, even though we weren't in the same room. Or perhaps Mom was there with each one of us at that particular moment. I don't think it was a coincidence.
Mom died on Christmas Eve. Christmas is her favourite time of year. On the day she died it rained and rained, thunder and lightning, hadn't done that in Austin in over a month. I'd like to think that part of her 'Come to Jesus' talk with God was about how little it had rained here lately...she was always such an advocate for nature.
One evening when Katie and I went to visit Mom, Katie told me a funny story that Dad had told her. I repeated the story to Mom and she laughed- which at this stage was a miracle! We figured we were being afforded a rare opportunity of clarity so took advantage of it and told more funny stories, all of which she laughed at. I was able to ask her if she wanted the minister of our childhood church to come by to say hello. She said 'I do'. She hadn't been able to speak properly in months.
One afternoon, my belly was particularly heavy and I said that I was tired of being pregnant. Mom proceeded to repeat 'you're pregnant' at random moments throughout the afternoon. I later asked her if she wanted to feel the baby and she said, 'I do'. Before I could place her hand on my belly she reached up and grabbed my left boob. I said, 'that's my boob, Mom,' and she said, 'Big boob!'.
A week or so before she went into sedation, she spent almost a whole day seeing something, someone, people. She looked up and over her right shoulder almost all day long. She was in a peaceful place and although we couldn't understand her, she spoke to them, reached out to them, even sat up and reached out a couple of times. Later when Dad was there, she sat almost completely upright with both arms outstretched. She had been unable to even turn her head on her own.
The hard stuff: (Because HD destroys the nervous system, thing like swallowing become impossible.) Seeing her struggle to drink a can of coke or tea or broth. It would take her at least an hour if not longer to get it down, gagging after almost every sip. In the end, she'd go through all of that only to throw it all back up.
Seeing the look of fear in her eyes. Hearing her cry uncontrollably. Not being able to understand specifically why she was upset. The way her jaw shivered like she was cold. Seeing her lifeless body, still warm to the touch. She was so pale.
Watching the man from the funeral home wrap her body in her bed sheet, covering up her face and then covering her body with a velvet blue blanket. We walked her out to his car and away she went. It was the last time we saw her.
She donated her brain to Harvard Brain research centre, mainly for HD research. Her organs and tissue went to another place. She will be cremated and sent back to us. We will spread her ashes in the blue bonnets some springtime. (We did this.)
And now, I miss her. I miss the times we would have had together if she hadn't been robbed of her life. I wish I had gotten to know her as a woman instead of just my mom. I get sick to my stomach when I think of Katie having to face this very same journey. I watched her playing with the kids today at this silly bouncy castle play centre and my heart broke. I don't know what to do. I don't know how to help or to make her life any easier.
We are flying home on Thursday. While I am ready to be back in London in my own house where I can have some help, I am not ready to leave Dad and Katie. I am afraid of being so far away and grieving on my own away from them.
Heart still broken. ------------------
This, friends, is HD.
______________
Fast forward six years.
My sister and I both are mothers of four children each - six boys, two girls. Our dad is overjoyed that he is no longer outnumbered. My youngest is one, my oldest is 8. We live in the beautiful South Downs National Park (not, like, in a tent but in a HOUSE which is sat inside the park...it's a huge park...more like, whatever, you get what I mean!) and we home educate our children. We follow my husband's career and move to another part of the UK. We live in rural England in a beautiful OLD home, make new friends, our baby turns two...
...we find out I have breast cancer.
No history of it in our family. No symptoms. If I hadn't said anything to my doctor about a small lump, it would have killed me, no doubt about it. Breast cancer- the silent killer. Fucker!
My dad and sister drop everything and fly over from Texas. I have a mastectomy, my sister helps me look after my children and keeps things running as close to 'normal' as possible, my dad learns how to drive on the 'wrong' side of the road and delivers me to countless doctors appointments and pre-op hospital visits. Katie returns home after three weeks, dad stays for three months- a man with no experience of parenting young boys and certainly no experience of home educating but nevertheless jumps in wholeheartedly. I have six rounds of chemotherapy, three weeks of radiotherapy and a year later, have a new boob built using the latissimus dorsi muscle from my back. And THEN, have a new nipple created using what my surgeon calls, 'nipple origami'- it had its first birthday just last week. Who knew?!
What does this have to do with my HD story, you ask?
Everything.
Life, man, it happens. S*** happens. But so much more good happens than the bad.
Was I frightened when cancer came knocking? Hell yeah. Did I lie awake at night terrified that the chemo wouldn't work and that I wouldn't get to stay here and be a mama to my boys? Every night.
Every. Single. Night.
And yet..
Huntington's taught me, at 17 years old, that I have a CHOICE about how I feel. I can be afraid and live inside of fear OR I can be afraid and live an amazing life DESPITE the fear. Because I was faced with my own mortality at a young age, I have tried my best to live my life with an appreciation that can only come when you have seen death so closely. I have tried to set a positive example. I have tried to see the best in everyone. I have tried to take care of myself and honour this body that carries my soul here in this realm.
And so...
When cancer struck, I didn't have much soul searching to do. I didn't need to drastically change my diet or learn how to exercise. I didn't even feel angry because, you see, I had already done that- I had already done angry, and it wasn't good. As a young woman, I had to learn - in my own time - that angry or not, HD was a part of our lives and that if I didn't want to waste the healthy time I'd been given, I better not spend any of it feeling resentful.
Yes, HD sucks. Yes, cancer sucks. Nothing can change that. But what CAN change is my attitude towards everything that happens. I can CHOOSE to take the shit and turn it into manure to grow something beautiful. The adversities that I have faced in my life can connect me to people I'd never have had something in common with if it weren't for these things. I get to hold space with people for the rest of my life and feel relief when, after telling our stories, we remember that we aren't alone. We were never meant to be alone. This human experience is meant to be one of connection and empathy...and I don't know about you, but I connect most with people when there is no bullshit- just the messy, beautiful, complicated beings that we are.
I have a vivid memory from this time, a beautiful summer evening, and I was sitting on our front steps talking to my sister-in-law on the phone. With tears in my eyes and a knot in my throat, I said, 'You know, Beth, I hope so much that this story has a happy ending. I hope so damn hard that I get to stay here and watch my boys become men. But if I don't, at 37 years old, at least I can say, with my hand on my heart, I wouldn't change a thing. I have lived a good life and I hope I have shown my gratitude all along the way.'
And here we are, in 2020. Twenty three years since my mom's diagnosis. Eighteen years since I moved to England. Ten years since I tested negative for Huntington's disease. Three years (and counting) since cancer was this dumb thing that happened to me once.
What next?
I live in gratitude. I remember to have fun. I decide to not live each day with fear disguising itself in all sorts of ways allowing it to live just below the surface of everything I do. I laugh. I remember to be the 'Crazy Aunt Cindy' in every aspect of my life. I buy a ridiculously enormous faux fur coat and wear it along with bright red lipstick every day even if all I do is sit on the sofa and write you a story...
Friends, LIVE. Do it. Get out there and no matter what, don't live small. Life BIG, in whatever way that means for you. I once told you, I HAVE no comfort zone, so big for me is different. For you, it might mean that you find your voice in other ways but by golly, FIND. YOUR. VOICE.
As far as I know, we get one shot at this life thing. Do I make mistakes? All the time. Am I perfect? Hell no! Am I crazy? I hope so.
Thank you for being here with me. I hope it has been helpful, or at the very least somewhat entertaining, to hear the condensed version of me. I hope, if anything, you know that you are not alone. We need each other. I am here for you.
Cindy
Cindy's story can be followed on social media platforms:
Facebook Page - https://www.facebook.com/amileadayforhda/
Instagram - https://instagram.com/a_mile_a_day_for_hda/
