7 minute read
Five Little Words
Written and Photographed by Reagan Lee and Designed by Sage Zbinden
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Five little words changed everything. Her eyes delivered the news before the words could escape her pursed lips.
“I don’t have good news,” said Nagmeh Dorrani, genetic counselor at the University of California, Los Angeles.
There was a moment of stunned silence as she quietly backed out of the room. It was the calm before the storm. Tears streamed down the girl’s porcelain cheeks as the realization settled in that the nightmare of Huntington’s Disease was now her reality.
Huntington’s Disease is an extremely rare, incurable and untreatable neurodegenerative disorder that is passed genetically through generations. It causes the breakdown of nerve cells in the brain and affects a person’s cognitive, muscular, psychological and behavioral functions. Symptoms are often first noticeable in a person’s early 40s — although the exact timeline varies from person to person.
The drive home after the diagnosis was heavy. Her father drove the car while the rest of the family sat in devastated silence, attempting to process the information bomb that had been detonated.
The following weeks were a blur of tears and despair that faded into months of apathetically living day by day. Even the simplest of chores seemed like a mountain to be climbed, and if surmounted then listless exhaustion was the reward.
Apathy turned into frustration, and frustration gave way to anger. White-hot rage burned deep, as her soul grappled with God for allowing her to be plagued with this awful affliction. The anger was overwhelming and incinerated every part of her life without exception, leaving a pile of ashes in its wake. The embers were aglow with residual anger but only showed the remains of what once was, leaving the imprint of the person lost.
Life carried on. The sun continued to rise and set on the world despite the lost will to live. One evening she seriously considered if it would continue to do so with one less heartbeat. It seemed that not breathing was better than breathing in constant pain. Suicide seemed like the ideal solution. Jesus was waiting and no one on this earth needed the shadow of the person who used to be.
Five little words, once again, changed everything. A text message lit up the phone on the nightstand as she stared into the darkness contemplating the importance of life.
“I need you. Please come,” wrote her mother.
The request was not as dramatic as it seemed. She simply wanted help working her cellphone, and yet in that moment, the world was clear for the first time in a long time.
My life was flipped on its axis two different times by five simple words. The smoke that had been covering my life dissipated and it became crystal clear that I am not a broken toy. My life — and every life — is important despite the hardships.
The fog cleared and friendships that had been ignored were rekindled — friendships that were both a blessing and a curse. The illness and its effects settled like a thin layer of dust over my life, but were not visible to those outside of my immediate family.
Regularly good intentions got in the way of common sense and empathy.
“You don’t look sick.” “It can’t be that bad.” “It is a long way off, don’t worry about it right now.” “Just live in the moment.” All were common refrains heard within the first two years of learning to live with such a heavy diagnosis.
In an effort to comfort both me and subsequently themselves, people often tried to minimize the diagnosis by pointing out that I was not physically manifesting any symptoms. They failed to consider the mental and emotional trauma I had endured, and would endure for the rest of my life.
People worldwide are suffering in silence while learning to live with rare chronic illnesses. Unfortunately, this story is not all that rare or uncommon regardless of age — young adults are no exception to this.
Elizabeth Johnson, senior photography major, was diagnosed in 2016 with Ehlers-Danlos Syndrome, also known as EDS.
EDS is a rare illness that causes connective tissue problems, and often leaves patients in constant pain. The disease is passed genetically through families.
Johnson says she has been harassed multiple times for using her medically-issued handicap placard for the pain her illness causes.
“An officer followed me and walked up to my car while I was parking and asked if I could park somewhere else despite the handicap placard hanging from my mirror. I told her, ‘No, I am handicapped and I am allowed to park here,’" Johnson says. “She proceeded to look down at my legs, back up at my face and then looked at the handicap placard, and asked me to prove that I am handicapped and allowed to park there. I told her it was my placard and that I was allowed to park in any handicap spot and she still looked at me funny, but eventually walked away.”
People struggle to believe in things that cannot be evidently seen or tangibly proven. Unfortunately, this includes a variety of chronic illnesses. Patients everywhere have stories similar to Johnson’s about not being taken seriously, or even being questioned because people believe they are “not really that sick” or are “looking for attention.”
“At first I didn’t want to know if I had the same illness as my mom and my brother, and then I was diagnosed and issued a handicap placard, and then I started using the handicap placard," Johnson says. “I felt guilty because I knew I looked fine; I don’t look sick.”
“I didn’t use (the placard) for a while, and when I finally convinced myself to use it I started getting nasty notes left on my car. On more than one occasion people would wait by my car for me to come back and then start yelling at me for ‘using my parents or grandparents handicap placard’ when in reality it was, and is, mine,” Johnson says.
Having a strong support system and being taken seriously is important for people living with chronic illness.
Dorrani is a firm believer in not grouping everyone into one box based off diversities.
“I went to a talk recently titled ‘Neurodiversity’ and it was about invisible disabilities and how to deal with them,” Dorrani says. “It was specifically about people with autism. If you look at someone with autism, they do not look any different. They are different neurologically; they are neurologically diverse. You cannot expect everyone to be exactly like yo,u and just because you cannot see it does not mean it does not exist.”
In addition to not placing social expectations on others, she stresses the importance of patients having strong support systems.
“I really emphasize the importance of a strong support system. I really try to encourage people to see what works for them, especially getting help from other people — family, church or faith in general, friends and a community of people that can help them,” Dorrani says. “I really think that is the key. I really like when people find that color in their life and try to get help from other people instead of trying to go through it alone. It is hard to go through things in life alone, especially when you are young. It is key to find those people who can help you cope with things.”
Dr. Arik Johnson, clinical neuropsychologist at the Ronald Reagan UCLA Medical Center, encourages anyone with chronic illness to not only find a strong support system, but also to seek involvement in some form of medical observance or clinical trial to steadily track his or her condition and progress.
“My general recommendation would be to be involved to your level of comfort. Some people are ready to do everything and some people are a little bit more hesitant,” Arik says. “I think it is a good idea to be involved depending on the condition and the person’s status. It is important that it works for them. I encourage the individual to be aware of what their level of comfort is and to establish connections to monitor their condition as it changes over time.”
Chronic illnesses come in many different forms and often affect their victims in ways that cannot be physically seen — this does not make them any less real or devastating. People living with chronic illness need strong support systems and validation rather than skepticism; they need interest rather than hostility. Many suffer in silence out of fear of being viewed as weak or different.
Be kind, listen and pay attention to those in your life. Most people living with a chronic illness do not want you to try and fix it, or for you to make them forget it. They simply need a shoulder to lean on, an ear to listen, and a hug here or there. Be the difference — you can make a difference.
