“That’s against the law!” he shouted at me. This is the worst fight we had in our entire relationship.
“I don’t care about the fucking law Chris! I don’t want it! We already talked about this before! That’s why I agreed to marry you in the first place!” I shouted back. I didn’t want to experience it again. The nightmare. The nightmare of losing someone because of that curse.
“I thought you agreed to marry me because you love me.” I could feel the bitterness in his voice. How could he say that? God knows how much I love him. He’s the man who made me happy when I already forgot how to be. The man I decided to spend the rest of my life with.
“You know how much I love you.” I sat down on the couch and I couldn’t stop myself from crying anymore. I am three months pregnant. No, I am not a teenage mom. I am actually married for two years. I should be crying from happiness at this moment, but I am not. I DIDN’T WANT THIS. I am sure I haven’t missed any of my pills, but what the hell happened?
“Do you know how long does an abortion lasts?” he looked at me with pain in his eyes. I did not respond. “It will take ten minutes for the procedures, but it will take eternity to regret it.”
“And what if he or she’ll get the curse? It will take nine months to bring him into this world, but it will take the rest of my life to remorse giving him a life he’ll regret!”
“It’s just fifty percent Lo! Look at the brighter side! He or she might live a normal life like you! Do you want to deprive him the right to live? Do you want to take away the fifty percent of him living a life he deserve?” he brushed my tears away and smiled at me. “It is our baby. We will have our baby. You should be happy.” He grinned and kissed me as he took the abortion pills away from me.
Most people developed the signs and symptoms in their 30’s or 40’s but some had the onset of disease earlier, some were even before the age of twenty. My mother was probably one of the strongest person I’ve ever known. She found out that she had that curse when she was around twenty. She never mention it to my father and to us ‘coz she didn’t want it to hold us back. I appreciated that, but not my dad. He felt betrayed. Mom developed the symptoms when she was forty and that was when our dad left us.
I have three siblings and I am second to the oldest. Our oldest brother, Kiel, worked for us and my two younger sisters, Natasha and Nicole were still going to school at that time. I, on the other hand volunteered to stop from college and looked for our mother.
I watched her as she slowly wasted and lost herself. The first phase was the changed in her behavior. She was always irritated, she was depressed and she even tried to kill herself by overdosing herself with sleeping pills. Then she developed chorea. She had involuntary movements all day long, and people were getting scared of her–including my youngest sister, Nicole.
Then, she had difficulty in speaking, she couldn’t even tell us what’s wrong when she’s in pain. After two years, she could no more eat solids and had trouble with swallowing. There were times that too much food got onto her lungs that resulted to series of pneumonia and she needed to be tube feed which meant more expense.
Due to our increasing debt from hospital bills and medicines, Natasha stopped from school and decided to help our brother to earn more money.
Our mom on the other hand, just got worse and worse every day. She even begged us to just stop. She said we were just wasting money since her curse was incurable.
It was so hard to be with her but I didn’t have a choice. I didn’t want to leave her in some facility where strangers would take care of her. She was still our mother even if she was becoming more like a stranger to us. There were times she forgot who we were and she couldn’t go to toilet by herself anymore. When I hugged her, it didn’t feel the same anymore. She was so thin and pale…and sick.
After five years of fighting against her curse, she finally rested in peace on May 5, 1985, a fine and peaceful Saturday morning.
Though I knew that it was not my fault, I still felt some guilt. If I knew more about her curse I might understood her more. I felt like I failed her.
And that was when I decided to learn more about the curse. About this incurable, 3-in-1 disease that have the worst aspects of Parkinson’s disease, Alzheimer’s and ALS. The Huntington’s disease. Huntington’s disease is a fatal genetic disorder that caused the progressive breakdown of nerve cells in the brain. Every child of a parent with HD have a 50/50 chance of inheriting the gene that pulled this wicked prank that caused this disease.
It was devastating to lose the light of our home and it was more shattering to know that one of us might go after her. Luckily, after a year when our mom died, there was already a genetic testing to know if we inherited the cursed gene. But given the current absence of an effective treatment or cure, we didn’t see any benefit knowing that someday, we will also develop this disease.
This privilege of knowing if we inherited the gene was like getting an envelope with the time and date of our death, and it was up to us if we will going to open it or leave it as it was.
In our case, Kiel and I decided to open the envelope. Natasha did not and Nicole didn’t have a choice. She was just fifteen at that time and genetic testing for children before the age of eighteen was typically prohibited as the child may not understood the full implications of the disease.
Did I regret it?
I would be lying if I said I didn’t.
Kiel and I both have the cursed gene.
I thought taking the test would just be like finding out that you were pregnant. You would know that you would have a baby in nine months and you would need to take care of yourself, your tummy would get bloated and you would need to buy baby stuffs…but I guess it was not.
Unlike pregnancy where when you aborted the baby you will stop yourself from becoming a mother, knowing you had this gene, you were simply…doomed.
No abort the mission, no retaking of exam, no second chances. In reality, it was like I discovered that there’s a meteorite that would crash on earth tomorrow. I felt helpless and envious of the unaware majority. I wished I didn’t know. I wished we didn’t know.
At his thirty, Kiel s tarted to show signs of chorea and other neurological symptoms. And before he lose himself like our mother, he committed suicide.
His suicide was like an epiphany for me, a moment of sudden revelation, an insight, the ‘abortion’… a light on the end of the tunnel.
At twenty five, I started thinking about what will my life was going to look like. I wondered if somebody will going to love me knowing that I was cursed. I wondered if someone will want to be my husband knowing that he could end up taking care of me and needed to watch me as I suffer and slowly die.
I wondered if Prince Charming will still accept his Cinderella even if she wouldn’t be needing her shoes anymore for she couldn’t walk and dance any longer because of some wicked disease…more wicked than her step mother and sisters…more wicked than anything else…
I wondered if fairy tale still exist…
And it did.
I met him on July 17, 1988. It was a sunny Sunday afternoon and I decided to spend my day in the city library. Even though I already opened Pandora’s envelope, I decided not to linger on it too much. I didn’t want the disease to define who I am, and well…I’m still alive.
Reading is one of my hobby. Spending the whole day in a library, seeking for solace of books was one of my amenity. I loved it how books were like magic portals that when I opened them, I sunk into them and escaped the world. They were like black holes that will lead you somewhere else.
And since books are magical, then what about the library? Maybe it is the Utopia itself. That was why when people asked me where did I meet my husband… I always smiled and said…in Utopia.
Was it love at first sight? Was it fairy tale? I didn’t know.
He was about to pull the book I was going to choose too, that resulted on us, held hands trying to get the same book. A book… about stars. It was funny and cliché that we stared at each other for a while before I got back into my senses and handed the book to him.
He smiled at me and my world stopped. It was a contagious smile where I couldn’t help myself but to smile back. His where-have-you-been-all-my-life smile was warm like the first breath of spring after winter. With that smile…I realized that it was not bad a life after all.
Our relationship is cliché. After that meeting, Chris asked me to hangout for a coffee…and another coffee and another until we decided to level up the hanging out to dating and into a more serious relationship.
I loved him. I loved how cool, smart and positive he is. I loved the way he smile. I loved his eyes and the way he looked at me. I loved his thick eyebrows that furrowed as he read. I loved how he loved stars. I loved his broad shoulders and strong arms. I loved his scent. I loved everything about him.
It was scary how much I loved him and it was more unnerving to let him go. I didn’t want to but I needed to. I didn’t want him to be the Prince Charming who will lose his happily ever after because of me.
After two years of relationship, I decided to tell him everything. I told him that I’m positive with the Huntington’s gene. I told him what it was like…the symptoms…that I decided not to have a baby to cut the curse.
He agreed. He took everything and he’s still with me. Maybe he was the bonus that God gave to me for enduring all the pain in the past and what will be in the future.
He was like an ice cream after going to the dentist, a juicy steak in the middle of a diet…an oasis inside the desert.
“The nitrogen in our DNA, calcium in our teeth, iron in our blood and the carbon in our apple pies. We’re made in the interiors of collapsing stars, we are made of star stuff,” he said as he quoted Carl Sagan as we sat in the library where we first met.
He then gave me Cosmos. It was the book we were trying to get the first time we saw each other. “We’re both from the same star, and I know even if I’ll look in hundred billion of galaxies, I will never find another ‘you’,” I opened the book and the ring was tied on the bookmark. “So how about spending the rest of our lives in the same constellation until we meet our own black hole?” and he flashed a will-you-marry-me kind of smile that made me say I do.
I smiled as I reminisced that time. That was two years ago and I somewhat felt a pang of guilt for regretting that I married him.
Aside from getting scared about whether our baby will catch the curse or what, I also felt something new. A newly discovered maternal fear. I didn’t want to be a burden to them. I didn’t want to see my baby getting scared of me like Nicole was to our mother. I didn’t want to be a parasite who will drain life from our family.
Having tested positive for HD, I was told it was inevitable that I would develop the disease at some point and the question was only a matter of when.
HD typically strikes in midlife. If I will be fortunate enough, I might develop it around sixty or seventy where I’m already a grandma and I already spent ample time with my baby and my hubby. But the thing was… most of it begin in late 30s and mid-40s…and I’m like…thirty one and I just got pregnant. I haven’t even hold my child in my arms.
I didn’t know if it was already happening. Depression is one of the symptoms of HD, but it can be also from my pregnancy or from overthinking about everything. I talked about this to my husband and I just got worse.
He was too positive, though I know why he was like that. What will be good if he’ll going to be a pessimist? I know that he was trying to cheer me up that was why he was like that but it just made me irritated sometimes.
One time, he brought some of our friends in our house and it felt like I was in some support group. Frustratingly, they were recasting this conviction as probability. They will say that doctors might find cure or there are miracles. And I felt like I was in a room full of people who were convincing me that Santa is real.
I liked control.
Having a baby (which turn out to be a girl), made me felt that I was out of control of my life. I never wanted a child. I didn’t want the possibility of passing the disease. I just wanted to be with Chris until I show the symptoms and I will just let him to leave me in an institution and he’ll have his new life.
But now that I am eight months pregnant, I had no choice anymore but to accept all of these. I think I needed to regain my composure. I badly craved for control. I needed to think and plan everything back to its place.
I read about Huntington’s again. I researched like I didn’t know anything about it. I found a book that I never read before. It was HD101 by Stacy Sinclair. I read there how the cursed gene could be inherited.
Since Chris was HD-free, there’s a fifty-fifty possibility that our baby will get the gene. If she got it and married another HD-free man, it will be an unending curse for us. If she’s HD-free like her dad, then there wouldn’t be a problem as long as she would not marry a man with HD. Her child and grandchild would be fine and the curse would end at me.
The book said that the first visible sign of HD is the chorea. A repetitive, brief, irregular, somewhat rapid involuntary movements that starts in one part of the body especially in the face, feet or hands.
As parts of the brain degenerate, patients suffered severe cognitive problems such as loss of memory, loss of judgment, personality changes, mood swings and depression. I once thought Alzheimer’s was already the worst disease that degenerates the brain, I guess I was wrong with that.
Due to the loss of motor skills and the jerky, squirming contortions that afflicted them, they find walking difficult and were prone to injury from falls. I couldn’t even think of losing my ability to walk. How am I able to work? How am I even able to go to libraries and book stores? My greatest fear was becoming an obstruction that needed to be navigated around by my husband or my daughter.
Patients lose the capability to swallow and sometimes die of malnutrition. I didn’t even want to be fed by anyone, how could I even let them tube feed me?
There was a story in that book that the husband had a new relationship while his wife was still suffering in HD.
I knew that Chris wasn’t like that, but I couldn’t stop imagining myself in that situation.
More than the maternal fear I am feeling right now, I feared that I might lost the ability to be a wife to Chris. I am afraid that the time will come that I am still sensible enough but couldn’t give his needs anymore as a wife.
I am afraid that my face will be distorted and he would not even recognize the beauty he once loved. I knew how selfish it was, but I didn’t want to see him with other woman as long as I’m alive.
I didn’t want to see another woman trying to be a mother to my daughter. If he’ll gonna have another woman, then, he should dump me first somewhere else so that I would not see them… I would not see how another woman will take the reason for my existence.
I wasn’t surprised to read the figures for HD-related suicide. Three out of ten people with the illness tried to kill themselves, yet three-quarters of sufferers carried on.
Why? Maybe they were afraid of hell and they believed of some sanctity of life. Maybe their support group made them to carry on by making them believed that they were not suffering alone. Maybe their husband or wife tricked them that they were not an encumbrance like they thought they were. And I badly want to argue with them. I was not trying to persuade them to kill themselves, I was just trying to be realistic!
First of all, what kind of God will make them suffer on hell because they took their life? They already suffered enough and what? They’re going to suffer again? What kind of religion is that! He gave us a brain that have the capability to decide and think. Then, I believe that everyone has the right whether to kill themselves or go on.
Next, yeah, they’re not suffering alone, and someone will suffer from it soon, not just some random stranger, not just some passerby. It will maybe their sister, their daughter or son, their nephew or anyone from their family. Do they want them to see how will they suffer? Do they want to inflict them the horror of their future?
Furthermore, their husband or wife might said they will never be a burden, that’s not fucking true. Maybe they opposed it because they haven’t seen them as the suffering, mad, dependent wife or husband. But have they thought that it will be more painful when they see how they regret their decision in the end, thinking, ‘yeah…a dead wife is better than this one’. Come on, they were just trying to cheer them up!
Merely existing in this world isn’t enough! Everyone needs to become…something, someone. Everyone will crave for a reason to live, our essence, and that’s one of the human nature. We could not trick ourselves to forget that.
Moreover, dependency is degrading!
Could anyone picture themselves being pushed around in a wheelchair by their child because they couldn’t walk? He should be doing his homework by that time! He should be living his life! They’re going to ruin his childhood, or his teenage life…or simply, his life.
Could anyone imagine not being able to have sex with their partners?
Could they imagine themselves as they slowly forget everything? The first time they met their spouse…their first kiss…their name…their child’s face…their selves?
After reading Me Before You by Jojo Moyes, I found out about dignitas. Dignitas is a Swiss group helping those with terminal illness and severe physical and mental illnesses to die, assisted by qualified doctors and nurses. They provide assisted suicide for people if they are of sound judgement and should had an in-depth medical examination from psychiatrists.
I watched a documentary film: Right to die in the Dignitas website. It was broadcasted on Sky Real Lives and was directed by Oscar-winning Canadian John Zaritsky, it depicted the assisted suicide of several people who had gone to Switzerland to end their lives. It included the story of Craig Ewert, a 59-year-old retired university professor who suffered from a motor neuron disease. Ewert traveled to Switzerland where he was assisted by the Dignitas NGO. The documentary showed him passing away with Mary, his wife of 37 years, at his side.
I realized that Dignitas is the control I was looking for. I asked my husband to go with me in Dignitas as soon as I showed the symptoms. I wanted to die beautifully, no muscular spasms, no funny face. I wanted my suicide letter to be still well-written, not just an odd-looking scribble because of chorea.
I wanted them to administer an oral dose of an antiemetic drug, followed by a lethal overdose of powdered pentobarbital dissolved in a four seasons fruit shake. Then, the pentobarbital overdose will depress my central nervous system, causing me to drowse and fall into my slumber with my handsome-looking husband as the last thing on my mind. Anesthesia will progress to coma as my breathing becomes more shallow, followed by respiratory arrest and a peaceful death.
It will be painless and I would be the author of my death.
My husband got mad at me for even considering it. I even called him selfish for not wanting to let me go, but he said I was the selfish one.
Maybe I am.
I told him I couldn’t bear to make him watch me suffer, but he said that it was not about him. I was the one who couldn’t bear to watch myself suffer.
I just didn’t want to suffer.
In the end, I was able to pursue him to say yes, though I could still feel his objection to the topic. Maybe he just said yes just to end the argument.
My water broke on April 8, 1990, a hot Friday afternoon. Chris panicked when I called to his office. He drove the thirty-minute drive from his office to our home for just five minutes. And luckily, he didn’t get any ticket for over speeding. We went straight to the hospital with nothing but my purse.
Chris went out for a moment to settle my admission and everything. I was left in the peaceful environment in my private room, enjoying the view of lake in my window, and that calm hour I spent alone with the comforting sound of my girl’s heart, transmitted in a constant stream of dub-dub- dub-dub from the monitors strapped around my very large tummy.
I was nervous and scared. But as the nurse came in and put the tiny diaper, bulb syringe and the little panda hat for my baby on the surgery table beside me…I felt overwhelmed and moved. The baby inside me, who I tried to abort was only moments away from being real, from being place in that diaper, wearing that cute hat and put on my arms.
Chris came and smiled at me as he saw me crying. The pain increased and the nurse who was looking after me saw me winced in pain. “Do you want an epidural?” she asked. I know I should say yes, but my stubborn self said no. I wanted to feel everything. I wanted to suffer every contractions. Maybe this way, I could atone my sins of planning on aborting her.
My pain was monitored by my own perception of contractions. “On a scale of 1-10 how would you rate your pain?” the nurse asked.
“Umm…five?” I answered staring at the faces pain scale on the wall. Then five became seven, seven to eight and then eleven, and there was no eleven on the chart, it was just that I couldn’t take the excruciating pain anymore.
I finally asked an epidural on my eleven. I got it but the doctor said that her head was too big and down too far so it didn’t work.
“Push it more.” the doctor calmly said.
Chris was holding my hands too tight and that, I knew he was nervous too. I could feel his fear through his grip, but I realized how much he loved me by that time. Everything kept on coming to me like flashbacks, as if I was on a near death experience.
The doctor told me to push again and I did. I was crying. I pushed one more time and heard a weak crying of a baby.
Chris eyes were wide as he stared at our baby who was holding by the doctor. She was so pink, bloody and perfect.
I would never forget that euphoric moment when they put her on my arms. I placed my finger on her little hands and she clenched it.
I cried again, and the first word I said to her was…sorry.
We named our baby, Avisha, it means gift from God in Hebrew. She is really pretty and a cheerful baby, a truly gift from God.
I realized new things after Avi came to us. It felt like she had magic powers! I found things that once seemed so important were now meaningless.
Like all the pain I had in the past. It didn’t mean that I already forgot about them, but it felt like I suddenly discovered a new inner strength that I never knew I had.
She could even manipulate the time. I didn’t even need my alarm clock and watches anymore. At three AM, she needed a change of diaper. At seven, she needed her milk. At nine, it’s bath time! And I didn’t care about Friday nights and weekends anymore.
I became aware of my surroundings too. I just discovered that we have a neighbor, and I was able to talk to her!
I became an understanding fella. Instead of getting irritated to crazy kids and crying babies that throws up in public transits, I am now giving a pats-you-kind of smile to their parents.
Everything about her matters! I was no longer disgusted with her poop, and I was actually happy when she does it on time. Her ‘firsts’ meant so much to me! I took a hundred of photos of her first tooth, her first meal, the first time she stood up.
I actually cried a lot when she first called me mama and even though Chris did not admit that he cried a river in our toilet when Avi called her dada… I knew that he did. His eyes were so puffy that time.
I became selfless and at the same time, I learned to value myself more. Instead of spending all our money on books and on my own clothes, I preferred buying diapers, and her clothes.
I had accepted all the pounds I gained for having her, and I learned to respect my body more. My heart breaks much more easily, especially when she’s sick.
And sometimes, when I think that there’s a possibility that she would inherit my cursed gene, I could feel my world crumbling down.
I was still wondering until now how did I love a complete stranger more than anything else in this world? When did I care this much?
I didn’t know…and who cares?
Six years had passed and I almost forgot about my dilemmas. I was too happy and I thought, once again, that God might not that bad after all.
Natasha finally opened the result of her test and she was free with HD, and so was Nicole. I was so happy for them.
Sometimes, when I stared at Chris and Avi, I felt so contented with my life. I have a loving, kind and handsome husband and a smart and charming Avi. She was so good at school and she was a piano prodigy in her age.
Everything was perfect…until that day came.
It was Avi’s recital. She prepared for it almost every day, but when it was her turn, she did not move on her chair at all. We tried to cheer her but she just stared blankly at the piano. After waiting for her for a long time, I finally decided to go up on the stage and talk to her. I could hear everyone whispering and some thought that she was just nervous.
“Mama, I can’t remember how to play,” she mumbled and tears rolled down from her cheeks. I didn’t know what to do that time but I managed to carry her to the backstage.
After that recital, she came back to school like nothing happened. Months had passed and we almost forgot the incident. One day, she went home crying. She said she was laughed by her classmates because she was stuttering and repeating things.
I thought she simply had a cold feet.
I thought she was just too nervous that time…
I refused when Chris demanded to take her to the doctor.
I thought everything was normal until she tripped herself and fell on her face, we had no choice but to bring her to the doctor.
I never thought or never wanted to think that she was already showing the symptoms. But guess what, she already did.
The first symptom was the memory loss…and then the stuttering…and the tripping. I did not believe it at first, we had a second opinion, and third…but they all had the same findings.
Juvenile Huntington’s Disease, a less common, early-onset form of HD, it begins in childhood or before the age of twenty. Only six percent or one over ten thousands of people, affected with HD will develop symptoms this young, and I didn’t know what the fuck was wrong, how the hell my sweet, young and innocent Avi got it.
“It was me who supposed to suffer it first! She’s barely seven! She haven’t experienced everything!” I was crying hard when I got to my sister’s house.
I left after finding out everything. I just didn’t know how to face Avi, how could I say I was the reason for her suffering? How could I even tell her that she’s sick? How am I going to tell her that she was going to die? She didn’t even know what death is!
And then for the nth time, I lost control of my life again.
Chris fetched me up. He always knew where he would find me. The silence was deafening in the car, I didn’t even know what to say to him. Maybe he was already blaming me in his head. Maybe he regretted that he married me. Maybe he wished that he haven’t met me in the first place.
“Don’t overthink,” he broke the unnerving silence between us. “Whatever you’re thinking, it’s not true.” Can he read my mind?
“Yeah, there are no cure yet, but some therapy can slow down the progress of HD. Think positive. We’ll do everything for her,” he smiled bitterly.
I nodded silently. I was so amazed on how strong he is. I’m glad that he’s my husband. Without him, I might already gave up everything a long time ago.
I heaved a deep breath before I came in her room. I saw Avi coloring her books. She smiled at me as she saw me. It was a radiant smile, a smile I never wanted to lose.
Two years had passed, Avi still go to school but with a personal aide with her since she couldn’t walk straightly anymore. I already quit my job and I was already on my final week of notice. I decided to take care of Avi personally, I wanted to spend time with her as often as possible.
“Can I stop going to school daddy?” she uttered out one night on our dinner. I looked at Chris and he asked her why.
“My schoolmates kept on bullying me. My teachers look at me like I’m such a burden. My best friend, Louisa doesn’t talk to me anymore, she’s ignoring me,” she pouted. We were just listening. I wanted to get mad. I wanted to go to school and confront all of them. I wanted to ask what was wrong with them…but then, I realized…I was one of them.
What if I would see them on my daughter’s eyes?
What will I do?
What if she would realize that without the autonomy and the strength of her mind, her life would be meaningless?
What if she would think that dependency was degrading?
What if she’ll believe that suffering was pointless? How could I tell her that these were all wrong when, I, myself, believe that they were all true?
Before I went to bed, I looked for something in my treasure box.
My last letter for my daughter.
The letter was meant to convince her that she will be alright without me. It sounded smooth, self-protective but convincing. It was meant for my daughter, but right now it was meant for myself.
I knew I was egoistic, but now that I was looking at the letter like it was a letter from my daughter, I just wanted to say to myself…
I was wrong…
No, I won’t be okay without her.
No, she wasn’t a burden.
No…dependency wasn’t degrading.
No living was not all for herself, it was also for us.
I sobbed as I crumpled the letter. Chris saw me and patted my head.
“See, I told you,” he said and I cried even more.
There’s no cure for HD, the progress could’t even be reversed or slow down as we thought. The only thing we could offer Avi were medications for some of her symptoms. She also have a speech and language therapy. Sometimes, she also used antipsychotic medication for her violent outbursts.
And as the disease progressed, the symptoms worsen.
Her chorea got worse. She was having involuntary movements all day long and there was a time that it was like she was having an epilepsy.
We brought her to the hospital. Chris stayed with her and he held her jerking hand in place. “Daddy’s here…it will be gone soon,” he whispered to her.
I couldn’t watch the scene anymore so I decided to go out of the room and talk to Avi’s doctor.
“You want to add another medication? But she’s already drinking three pills at the same time!” I exclaimed when the doctor gave another prescription of med.
“Don’t worry Lorraine, she won’t get overdosed if you’ll follow the dosages I prescribed,” he said. I know he was right, he’s the doctor after all. But as her mother, it hurts whenever I see how Avi struggled to drink all her medicines.
She was supposed to be indulging in sweet treats: ice cream, candies…cakes, not all these awful-tasting medicines. Some of her medicines even had side effects on them like stiffness, sedation and tremor which made her suffer more.
If I could only take the disease from her. If I could just stop all her trembling. If I could be the one taking the medicines instead of her.
I sometimes wanted to end her suffering, but thinking a life without her…I couldn’t. Yeah, I’m selfish. I am egotistical like my husband was when I was suggesting of going to Dignitas for me. Yeah, I’m self-centered mother who chose to see my daughter suffer than to lose her.
Maybe the thing Avi got from Chris was his optimism. Even though she was already suffering, she didn’t forget to remind me how to smile. Her smile is contagious.
I remembered when she first choked on her food. I was crying as the doctor performed an intubation and bronchoscopy to her. The doctor inserted a flexible fiber optic to remove the object choking her and as soon as she was okay, instead of crying, she patted my head like her dad always do to me when I cry.
She was still fighting.
She still have some hope.
And who am I to end this? I wouldn’t.
“No way! I can take care of her here! There’s no way I will let her in that institution!” I shouted at Chris when he told me that the doctor suggested to sign up Avi in a HD institution in the west.
“They have all the facilities HD patients need,” he countered. Avi was already suffering from dysphagia, the difficulty in swallowing and she has the risk of choking.
I cried again. I know Chris didn’t want it too. Chris is a strong man. He’s positive and cheerful. But ever since Avi got sick, I could see the pain inflicted his eyes. He was suffering too. Yes, as a mother, it hurts to see her suffer, but I think it’s equally painful for Chris to see his daughter cry and couldn’t do anything about it.
We decided to sign her up in the Oasis Hospice, in agreement that we would visit her every day and we would take her out for at least once a week.
Oasis Hospice is an institution for those who suffers in HD, founded by Dr. Liam Williams an American doctor in 1990. His wife suffered from Huntington’s and died from it so he decided to build a nursing home that will help the HD sufferers. Most of the patients here were those in the advanced stages of HD that decided to spend their last months and years here.
I was expecting a patient-unfriendly environment. A mental hospital-looking building or jail for patients, but I was wrong.
The Oasis Hospice has five floors. There were more elevators than stairs, chiefly for the wheelchairs of patients. The building was enclosed by polycarbonate glass and the windows were slat styled to prevent suicidal patients from jumping off.
There’s a chapel room, a gym, recreational area, garden, canteen with delicious foods, sterile toilets and hospital rooms. The whole building was painted with therapeutic colors with positive emotional impact for patients. It was more look like a school than a hospital.
Avi’s room was in third floor. She was with another patient, a mid-forty looking lady. I was willing to pay more so that she could have her own room but she said it was okay to stay with someone. They also had their own laptop if they wanted to write blogs, play games or talk to their friends. There was also a television and DVD set to ease their boredom.
There were caretakers assigned in each room to help them with everything. Karen was the one assigned to Avi and Mrs. Travis (Avi’s roommate). She’s around her late twenties’, a Filipina and she looked sweet and soft spoken.
We could visit her from eight am to eight pm, but we couldn’t stay overnight to look for her. We could also bring her out but we need to settle some papers first. Karen explained all the rules and regulations to us. Avi listened carefully and nodded when she needed.
It was quarter to eight pm and we already needed to leave but I couldn’t. “Our house is one and half hour’s away drive from our home, what will I do if something happened to Avi while we’re at home?” I asked Chris.
“They know what to do, and they will contact us immediately. We already talked about this.” There were black circles on his eyes and he looked tired. Maybe arguing was the last thing he wanted to do right now so I just nodded and agreed.
I thought Avi will cry and will ask for us to stay but she smiled and just hugged us goodbye. “See you tom,” she said as she kissed us. I nodded and left like a petulant child who didn’t want to go home after a tour in the zoo.
Our new lifestyle wasn’t good for me. I had restless nights. I couldn’t sleep at night thinking I’m not with Avi. I was worrying if she already ate, if she took her medicines, if she was alright, if she was sleeping and more what ifs. There was even a night I sneaked out to visit her and I got scolded by Chris when the hospice called him to report me.
A month had passed and good thing she did not choked in her food again. The canteen really know what to serve to them, though one time she told me she already missed my cooking and I was so happy. I’m not that good in cooking. Chris cooks more than me, but knowing my daughter missed the small things I done for her, it was just so touching.
I brought her a lot of books when I visited her. I also made a blog for her to write to. We visited different places once a week and spent more time with her.
Spring of 2006
“I’ve lost my mother and my daughter from Huntington’s Disease,” I started. It took me several months to open up to them.
“Can you share about it?” Jason, the organizer of this HD support group asked me.
“I don’t share because I need all of your sympathy. I’m not telling you that I am the most pitiful person here, and I’m not even trying to help all of you by making you realize that you are all still luckier than me,” my voice cracked and the girl with blonde hair and pale lips approached me and patted my back.
“I just…I just want all of you to know that I’ve lost someone I dear. Someone who meant the world to me. I want you to know that my mother was once here, she lived, and my daughter…she was here.”
“She’s still here. They are still here for you.” Those words weren’t comforting as they seemed. Because no matter how many times they would say they were still here, I needed to accept the truth that they were not anymore.
It was almost a year since that day…the day her heart stopped and all of her pain were finally over. The only thing I regretted was, I was not even there when she passed away. Karen said she had a peaceful death on her sleep, but what if she was looking for me that night? Once again, I felt I failed someone for the second time.
And this time, it was my daughter.
At first I still couldn’t believe that she was not there anymore. I still visited the hospice everyday and the only thing there waiting for me was her empty bed.
Her death hit Chris too. He always went home drunk and he always cried himself to sleep. I did not think of that as his weakness.
I understand him.
He’d been strong for too long, he never shed a tear in front of our daughter. He was a good father. He was been the best father for Avi.
I could still remember on how hard I prayed and plead to God that to take her place. But I guess I had been a bad mommy because the heaven didn’t want me but her.
Maybe she was already playing and running on heaven right now, the things that her cursed life deprived from her.
Maybe she could already eat all of the delicious food she couldn’t when she was still here. Maybe she already have a new mommy right there.
I hope that she was already happy.
I hope she could already remember how to play the piano in heaven.
I just hope that if she will have a new life, she wouldn’t suffer from the curse again, because she didn’t deserve it. She deserved to be happy.
I remembered that day when they called us and tell us that she already passed away, I felt my whole world had stopped. She was lying on that bed with a thin sheet of white cloth on her body. I was still hoping that time that it were all some kind of sick jokes. That she will jump to me the moment as I removed the blanket from her and she will laugh like normal kids do, but she didn’t.
She was there, she looked like she was just sleeping but her body was cold and empty. She looked exhausted. She was thin and pale. I held her hand, but she did not grip it like she normally do, like what she did when she was still a baby.
Dr. Burton Grebin said “to lose a child is to lose a piece of yourself”. I think that was wrong. I did not lost a piece…I lost everything. I lost my whole self. And even though I know that she was not in pain anymore… that she was already in heaven, still, in my part, it hurts like hell.
Women says there’s no greater pain than to bear a child into this world, but they were wrong ‘coz the greatest pain was to bury one.
Spring of 2012
We never got over losing her. Seven years had passed, and I already started to develop the symptoms of the curse that took away my beloved daughter. I decided to continue my plan on going to the Dignitas even though Chris begged me not to.
I didn’t want him to experience everything for the second time around. I didn’t want to give him the false hope that someone will discover a cure along the way, because it was all fantasy.
I didn’t want him to see flashbacks of how our daughter suffered.
April 25, 2012, a week before our flight to Zurich, a man visited us in our house asking if he could publish my daughter’s works. Chris and I thought he had the wrong house since our daughter never wrote anything, even a farewell letter. Until this guy, Mr. Dmitri showed us the blog, the blog I provided for Avi. I never visited the blog because she said she wasn’t writing anything on it.
My hands were trembling as I browsed the blog. There were even pictures on it. It was worth four years of her life, the posts were from 2001 to 2005.
“Can you give us some time?” Chris asked to him. Mr. Dmitri agreed and left us with his business card.
The blog’s theme was the same as it was when I gave it to her for the first time. The Header’s title was Avi’s Blog and there was a quote “Be strong, you never know who you are inspiring” on the pink background. She had hundreds of entries, and even though I am afraid, we decided to read them.
Her entries were written like a diary. Chris decided to read them for me.
September 15, 2001
Today, I learned what suicide was from the girl in room 201. She said it was the escape we need to end all our suffering. We won’t need to drink meds anymore, we will not choke anymore and all the pain will disappear. It was promising, but I think she’s wrong. Suicide is the act of killing yourself, and I think the pain won’t just disappear… it will only transfer to someone else and I don’t like that. I don’t want my mama and daddy to suffer because I love them.
She was eleven in her first entry and it was just a month since we admitted her in the hospice. Most of her entries were about how her HD progressed and how painful it was for her. Sometimes she reminded herself of the things she did not wanted to forget. In one of her entry, she repeatedly typed our names and how much she missed and loved us.
Chris and I wondered why Mr. Dmitri wanted to publish her blog until we saw her December 1 entry, when she decided to prove the essence of her life. Her calling. To inspire those who suffer in the same fate, the same curse. She wanted to tell everyone that suicide was not the answer. That suicide is illusory and we were all condemned to live.
December 26, 2002
I spent my Christmas with my parents and I just got back tonight. I was surprised to see Mrs. Travis on the corner of our room crying. I asked Karen what happened and she said that Mrs. Travis spent her Christmas here in hospice.
I remembered how excited she was for Christmas. She said her husband and daughter will going to bring her home to celebrate. It’s been a while since the last time she saw them and I was so happy for her.
I asked her what happened and it looked like her husband called that they spent the Christmas on someone else’s home. I hugged her that night to console her. Unlike most of the people here in hospice, she already accepted her fate, and she’s not denying about her losses and that’s what I admire about her.
No one told me that she made a support group in the hospice. How could a twelve year old girl do that? I am so proud of her and at the same time ashamed of myself.
From the beginning, all I wanted to do was to run away. I never wanted to suffer and I was so selfish, and here, my daughter decided to live until the last of her breath.
March 31, 2004
Suicide is grandiloquence, or is it not?
Carmen, 23, was in our support group. She was not there to support us. She was there to ruin us but we still accepted her anyway. Instead of sharing things that will inspire us, she shared a list why should we stop on carrying on.
She told us that merely existing isn’t enough. She slapped on our face how undignified dependency is. She made us realized that our suffering is stupid.
Well, she had a point, and maybe she’s right.
My heart lurched to stop, I wanted to tell here that it was not, I wanted to tell her that she shouldn’t believe her…and then I realized… I am Carmen too.
“She hate me, Chris.” A huge lump formed in my throat and I hugged him hard. He put his arms around me and I couldn’t help it, tears pooled in my eyes. “She despised me,” I cried.
“Sssh. She doesn’t…” he said as he kissed my hair. I thought I have nothing left to break ever since I lost her, but now… knowing that I failed her…I wanted to see her again and apologize for the last time.
It was funny that when she was born, the first thing I said to her was sorry, and now that she was dead…I still wanted to tell her that word…I was a failure as a mother, no, as a human being.
April 3, 2004
Euthanasia she said. The word sound so sweet, almost like the word utopia. I think it was a button in the end of the face pain scale, if it was already too painful to deal with, you can push it and ends everything. It’s promising, it was like a sovereignty… the freedom to choose. Then, if it was, where’s the freedom for your family to choose to not give up on you?
It is just mere selfishness.
I remember when Carmen lost her temper, early today. She shouted at everyone that she could do whatever she wanted to since it was her body anyway…I told her that she couldn’t and she got mad at me even more.
Why are some people like that? Just because you can…doesn’t mean you should.
April 8, 2004
Mama and Daddy took me out today for my birthday. I can’t tell them what we talk in the support circle because it will be against our rules.
This was the first time I saw my dad got mad when someone parked their car beside the ramp for wheelchairs. “How inconsiderate!” he yelled. I held his hands and I smiled to him. He said sorry and he just carried me while mama took my wheelchair.
I sometimes like it more in the mall than in the church. When I’m in the mall, some kids think that I was just riding on a cuddle cart, just cooler than theirs.
People are too busy shopping and they have no time to look at me with pity, and I sometimes wonder, that people in church too are busy praying, but why do they have so much time to whisper how poor and pitiful I am?
Daddy gave me a panda stuffed toy and mama bought a lot of pretty dresses for me.
I love my parents so much, and no matter how much I suffer, I will never give up. I will never give up on somebody, I will never give up for myself because they don’t. I believe there are miracles every day, and spending time with them is one of those.
There were lot of posts about her experiences, stories inside the hospice and her point of view in life. I couldn’t believe she actually suffered HD because she was the most sensible person I ever knew.
Her last entry was not when she died. It was year before. They said maybe because she couldn’t hold her laptop anymore, maybe she was already tired…but I think that was not it, but because she already said all the things she wanted to say.
November 15, 2004
My last letter for my mother.
I did not wrote a letter for my daddy because I knew how strong he is, I know that he already knew how much I love him and I know he will overcome everything in the future. Mama on the other hand, needs this.
Some people had become doctor to cure those who are sick. Some are teachers and teach us everything we want to know. Some decided to be a police officer so that they can defend us. Everyone has a calling, but what if you can’t be anyone you wanted to be? Are you going to give up? Does it mean that your life is less important?
I am fourteen. I never experienced school prom, I never had a boyfriend, and I never finished my studies. Like everyone, I wanted to dance in the prom. I wanted to fall in love. I wanted to be a great pianist and travel the world, but Huntington’s Disease prevented me from doing all of that.
Sometimes I get depressed. It was one of the symptoms, but I just can’t help it. I get depressed when I think how much I want to travel but I am confined in this hospice, I want to go hiking but I can’t even walk, I want to eat all the delicious foods but am afraid of choking. I want to fall in love but looking myself in the mirror, no boy will want me because I am sick. I want to kiss someone. I want to go to the beach, swim and build a castle. I want to play the piano again. I want to live more. I have a lot of things that I wanted to do, but it feels like I am trapped here in my wheelchair. It was like a cage for me.
Someone told me how to escape this confinement, suicide she said, euthanasia she said. It was promising, but I realized killing myself was not flying out of the cage, it was just falling out of it.
She believed that the essence of life is to be perfect, to impress people and to succeed in everything. She’s wrong. You don’t need to be perfect, you don’t need to impress anyone and you don’t need to succeed in everything. The essence of life is to help, to care, to inspire, to stop being selfish and to make your stay in the world worthwhile.
I want you to live…and like what’s written on my blog background…Be strong, you never know who you are inspiring.
I love you mama, you’re the best mother I ever had, and in my next life, if God will give me a choice, I will still choose you as my mom.
I closed Avi’s book Beyond Tears and smiled at the crowd in front of me. It became a bestseller’s book and we used the money from it to support the Oasis Hospice.
I decided to cancel my appointment in Dignitas and be a public counselor that supported patients who suffered the curse of Huntington’s Disease.
Chris and I also became volunteers and we aided HD groups who raised money and awareness, and groups that researched cure for HD.
I also joined Avi’s support group in the hospice, and yeah, it was so fulfilling to be there for people and made them feel that they were not alone.
Now. Did I live a life worth living?
Yes. I did.
Autumn of 2021
I thought I would have to teach life to my child, but it was the other way around. She taught us how to live a life and because of her, I found the reason for my existence. My calling.
I smiled and closed my third book after I read it to the brightest stars of my life.
I put the panda stuffed toy and the bouquet of white roses on their grave and smiled once again as I read the epitaph on their tombstone.
We love you daddy. Forever.
-Avi and Lorraine xx