Stories
Here you will find stories. Stories of humans, who experience illnesses firsthand. And stories of how these illnesses have left an impact on them and the people around them. We want to share them– because a single story holds tremendous power.
epilepsy: my son reese’s story
laura swain
It is funny how one event can completely change your life expectations, idea of happiness or outlook on life. As a 35-year-old mom of two, I admit to having felt flustered and worried most of the time, trying my best to hold down a full-time job while raising two toddlers alongside my husband, who also had a full-time job. It was usually with a mixture of tiredness, happiness and a little guilt that I would run over the day’s events when I turned the light off, wondering if I was letting down my work, children or husband, despite my never-ending race to fulfill all their expectations.
My sons Reese and Robert are now aged eight and six. When Reese was four, something happened that would totally change our lives and make me rethink what was worth worrying about. I remember it was a Friday, the only day I work half day, and I was sitting in the backyard with a cup of tea, watching Reese (then aged four) and Robert playing with a new set of toys their grandmother had bought them the day before. Suddenly, Reese’s normally lively expression went completely blank; he seemed to lose awareness of what was going on around him and was completely oblivious to my attempts to get him to ‘snap out of’ what at first seemed like simple absent-mindedness, but which, as the seconds passed by, awoke my instinct to the fact that something was wrong.
Later in the afternoon, I was surprised when the ‘absence’ happened again. When my husband came home, I told him about what had occurred and we decided to take him to the hospital. We were very surprised when a neurologist told us that Reese had suffered from a mild epileptic seizure known as an ‘absence seizure’. The doctors told us that the good news was that Reese might grow out of this in his adulthood; the bad news was that he could suffer from ‘complex absence seizures’ (seizures in which an epilepsy sufferer can make movements in addition to staring into space—these can include blinking, chewing or hand gestures). The medical team said he could also have learning difficulties, and social and behavioral issues.
It felt like my world had been torn apart; suddenly, everything that had seemed such a hurdle to me (getting the kids bathed, fed and dressed every morning, getting them to daycare and making it to work on time) seems like child’s play. Reese had a condition the doctors assured me could be treated with medication, but there were no guarantees. They also said that children who began having absence seizures before age nine were much more likely to outgrow them than those who began seizing after age 10, which was a bit of a light at the end of the tunnel.
Two years have passed since that fateful day. Reese continues to have occasional seizures despite the medication, but they are always short-lasting and so far, he has never had a ‘complex absence seizure’. I like to think that the lifestyle changes we made (eating healthy, ensuring Reese slept well and did exercise) went a long way towards keeping more complex seizures at bay, as well as making him feel confident about himself. Reese has been doing well at school and though he does have occasional tantrums, I like to think that is just part of his character and that together, we can work on keeping them to a minimum, helping find alternative outlets for any anger and frustration he can feel.
My youngest son, Robert, now six, is a happy, healthy boy; he always seemed to be the ‘old soul’ in the family and he never questioned the extra attention and care we bestowed on Reese. On the contrary, he likes to act like the doctor in the family and often says that when he is older he will study Medicine to find a cure for Reese’s seizures. When Reese is at his angriest, Robert is the one person who can help him ‘snap out of it’. With love, support and togetherness, I feel like there is no challenge we cannot overcome.
John Hopkins Medicine, Absence Seizures, accessed January, 2015.
PsychGuides, Epilepsy, accessed January, 2015.
Epilepsy, Absence Seizures, accessed January, 2015.
Depression
Allie Davis
I was a happy baby. Content. Cheerful. Pleasant. As I grew older, that bright side of me remained but a darkness infiltrated my being. It was a cancer of negativity in my thoughts. It wasn’t just my brain. Depression runs in my blood. Both my father and his mother struggle with this disease. My father bravely battles while still achieving worldly success in the medical field.
I have many fond childhood memories, but I cannot recollect a time I was free from that latent sorrow of depression. I remember banging my head against the wall, calling myself stupid, ugly and fat. It brings tears to my eyes just thinking about how miserable I felt about myself. I did not understand what to do to change and I felt little hope for the future.
Some time in middle or high school I was officially diagnosed with depression. I was prescribed anti-depressants but I never felt much effect. Nevertheless, I mirrored my dad and was able to be “successful” academically. I figured my depression was as “managed” as it could be. I presumed this was as good as it got and obediently took my pills.
College was better for my mental health. I found freedom and eventually a husband. However, even as my future brightened, the darkness persisted in my heart.
My transition into corporate America was tough. It brought my anxiety to the surface. Whereas I used to just feel sad, I started to feel angry as well. I cried often. On occasion I had to quarantine myself in the bathroom at work. Other times I could push it down until I got home. Sometimes my tears were so violent I started sounding like I would hyperventilate. Over and over I would tell my husband, “I can’t do this, I can’t, I can’t.”
I did not have a lot of love for myself for the longest time. What led me to seek help was my love for my husband (I hated bringing this negativity into our marriage), coupled with a real concern that I was not going to be able to continue with my well-paying secure job because of the havoc to my emotions. I owned my share of self-help books about depression, but when something is so deeply engrained in you, those are often too little too late. If anything, they overwhelmed me.
I started counseling and quickly realized its benefits. A professional who has an education in helping people process life another way makes all the difference. It has completely changed my life, but it was not an overnight process. Nor will I ever be finished with my journey. I started two years ago with, for the most part, weekly sessions. My therapist helps me recognize triggers to negative patterns and frame interactions in ways that serve me better than what I came up with when I was young.
She also led me to see God’s love and grace. I grew up as a Christian, but I always struggled to accept that God loves me, Allie Davis. We explored my discord in our counseling sessions and found that often at the root of the pressure, stress, and fear were false beliefs. For example, I had a subconscious belief that I needed to be perfect in order to be loved. I would never consciously claim that I should be perfect. In fact, I could preach all day about how we all fall short and it is only by God’s grace that we are saved. However, it took the expertise of a professional to help me genuinely recognize those gifts of grace and love as applicable to me. Now I understand the joys of being surrounded by God’s blanket of grace. I no longer need to doubt my abilities. God is here. I do not need to be perfect. God loves me as I am.
Although depression and anxiety run in my DNA, I no longer feel their effects. I am off the anti-depressants and I feel pleased with the present and excited about my future. I write this not to discourage the use of medication, but rather to share th`e message that depression does not define who you are nor does it determine your future. There is hope. So many people struggle silently with this and feel hesitant to get professional help. We are human. We need each other. There is no shame in that.
Bipolar Disorder
Subrina Singh
At 16, I was diagnosed as bipolar, and since then I have been treated with both medication and therapy. Accepting the fact that I will have to take medicine for the rest of my life has not been the easiest task. During my sophomore year at Stony Brook University I participated in an intensive outpatient program based on DBT (Dialectic Behavioral Therapy). DBT truly “saved my life”; it taught me how to cope with the symptoms of my illness and made living with bipolar much more manageable. However, soon after I was diagnosed with hypothyroid disease as a result of taking Lithium to treat my bipolar, I had to accept massive weight gain, which even many years later is still a struggle. Both my therapist and psychiatrist worked with me to overcome most obstacles that came my way. However, in March 2012, my sister was murdered, and things took a turn for the worst. Depression took over my life once again and in a moment of feeling hopeless, I overdosed but was lucky enough to be rushed to the hospital in time. Even with intense therapy and other therapeutic workshops, I was still suffering greatly from depression. I was eventually also diagnosed with PTSD during my first hospitalization this year at Four Winds. After being hospitalized in February 2014, I was once again admitted in April 2014.
Being bipolar is and will always be a major part of my life; however, it does not define me. When I thought it was taking over, I was close to dropping out of school but the strength to be a better person overpowered and I completed Stony Brook only to accomplish my next dream, being accepted into Columbia University’s M.A. program in South Asian Studies. My accomplishments remind me that being bipolar may make my life more difficult and present obstacles, but it does not inhibit my capabilities. While I am not happy or proud of the things that have happened in my life as a result of being bipolar, I can honestly say that I would not change a thing. I am happy with the person I have become and being bipolar has been a major contributor into who I am today. And for that I would not change a thing. I know the road ahead will not be easy but being bipolar has given me strength I never thought possible, and for that I have confidence in my future.
Epilepsy
Barbara Hoefer
In December 1995 at 7 years old, I was diagnosed with liver failure, and within 6 days I had only 10 percent chance of surviving. The transplant was successful, and ever since then my liver has been fine. But while in the hospital for 6 weeks after the transplant, I began seeing weird things, like an alien going around my father’s head that wasn’t actually there. The doctors just assumed these visions were a side effect of all the medicine I was taking, and did nothing about it; not knowing that these were seizures I was experiencing from my brain being attacked during my near-death experience. Because they did nothing, the seizures changed from simple partial ones-seeing things- to complex partial seizures three months later, where I started to stare and speak nonsense. I went to the emergency room, and was diagnosed with epilepsy. The doctors started prescribing epileptic medications on me right away. But over the 16 years that I’ve had seizures, none of these medications would cure them; it only decreased the frequency of the seizures. At the age of 20, I had brain surgery to take out the scar tissue causing my seizures. Unfortunately, the doctors could not go too deep, because I had a chance of going blind or having memory problems from the surgery. Leaving a little scar tissue deep in my brain caused me to be seizure-free for only 6 months; then they returned from the tiny scar tissue still in my brain. When they returned, the frequency was only once a month (unlike before surgery, where they were 2-3 times a month), and they weren’t as strong as before (I could finish doing dishes during the seizure fine, just with no memory of doing it!). Because of the seizures returning, my neurologist tried many different anti-seizure drugs on me. Ever since I was diagnosed with epilepsy back in 1996, I’ve been on about 15 different medications, all just reducing the frequency. Taking medicine is tough with the side effects: one drug made me a psycho, easily making me angry and causing me to overreact to family problems; another would make me brain-dead tired all the time; one gave me migraines very often; while another depressed me so much that I attempted suicide on it many times. I sure wished many times that there was such a thing as anti-seizure medicine that could prevent the seizures and not have side effects, all at once. In May 2012, my doctor tried a new drug on me, initially for my anxiety attack problem that began in summer of 2009. Ever since I started this drug, Clonazepam, I have not had a single seizure! Now 22 months seizure-free, I am finally learning how to drive at the age of 25. My mother says that everything happens for a reason. My anxiety problem, which started a year after my brain surgery, has led to my doctor finally finding the right anti-seizure drug for me. And to show how grateful I am that my seizures went away, I, a current student at Stony Brook University, am looking into ways that the college can start raising money to help find a cure for epilepsy.
Epilepsy & Autism
Lillian Gibbons
My daughter is 24 years old and she has Autism and mild mental retardation. When she was sixteen she also developed epilepsy and has Grand Mal Seizures since then. My experience parenting a child with a developmental disability I would call a journey. A journey with many twists and unexpected turns. Some good, some horrible and some remarkable. Parenting any child is a lifelong challenge, but one with a disability is ten times more difficult. I think if a parent were to see what is ahead they would be terrified with the responsibility. Learning to adapt to the daily struggles a child with a disability goes through has been a process of learning to accept the good with the bad. I feel like I have evolved from a young mother completely unaware of how to navigate the system. I now can advise families newly diagnosed with good advise and give them hope. Twenty years ago autism was barely spoken of except for the references to the movie Rainman. Compared to today, the information on how to help my daughter was scarce. Thankfully I met many wonderful people who have guided me on the path. I learned to become an advocate for my child and I was able to provide her with quality services throughout her school years. I felt a sense of accomplishment for being able to have her attend wonderful schools that were providing new strategies for working with autistic children. The hope was that she would recover with limited deficits. Even though this did not happen completely, she did benefit from these programs and is further ahead than she would have been without them. We have undergone many transitions. Recognizing her strengths and accepting her weakness has helped me advocate for the proper services that would provide the best opportunities. I have been disappointed and for the first time have felt frustrated by the lack of quality services on the adult level. Once your child graduates from the educational system they have very limited options. Even the most high functioning adults struggle due to the social aspects of their disability. My daughter will never be able to independently travel or be left alone at a job site, leaving the chance of her working at this point impossible. Having done my best to obtain the highest level of services throughout her life has been a bitter disappointment. Hopefully with the growing number of autistic people in our society there will be more of a effort placed in this area. Having satisfying work experiences and good recreational and social programs would give people with developmental disabilities like autism a better standard of living. Having our children reach their fullest potential..whatever that may be.. is what all parents want. Autistic parents are not different. I believe parenting my child has given me a different view of life and made me appreciate the things many of us take for granted. I have learned to be patient. I have had the ability to see life from a different perspective. For that I am grateful.
OCD
Anonymous
Have you ever waited for someone who excused themselves for the restroom? Probably have, but the experiences have been varied. For some the wait was short and hardly noticed, for others it was a tad bit annoying, while for others yet, it prompted the question “What took you so long?” Right? Sadly for my friends and family, the last question was always guaranteed whenever I excused myself, even if it wasn’t voiced.
Before I attempt to answer it, however, allow me to give you guys a rundown on my ethical background since it’s closely related to what follows. I’m Muslim and I pray five times a day. Before I pray I’m obligated to do a five-minute washing ritual to cleanse myself. For the average Muslim, it takes approximately two minutes to wash and 10-15 minutes to pray one prayer. For me, well, those minutes stretched into hours. Yes, you read it right. Hours.
Want to venture a guess on the condition? If you’re thinking anxiety disorder, you nailed it. I have OCD. Been diagnosed and just recently received treatment. But that’s a story for later. First, the journey.
I believe I had OCD from a very young age, but for a variety of reasons my young mind was able to suppress the compulsions I experienced. When I entered high school (or near about that time), the gears started to pick up pace and the OCD kicked in full force. The trigger could’ve been anything. What ended up happening was that I would disappear behind the bathroom doors for prolonged periods of time, come out soaked and disappear into my room for “prayer.” My family couldn’t fathom what was up with me. I was yelled at, questioned and dismissed with frustration when I had no answer to give. How could I? I was unsure of what was happening myself. And coming from a South-East Asian background, I knew my parents wouldn’t understand. They had never been exposed to these symptoms before.
To them I “looked” fine. So practically, there was nothing wrong with me. My time-consuming habits were intentional. I was just pretending to be religious. Suffice it to say, I spent my days alone in my room, crying. I didn’t know a way out. I would suffer the effects of the disorder and suffer the misunderstanding that stemmed from it. I didn’t block the bathroom on purpose. There were no spiritual gains I was making in those hours I spent in my room. Yet, I didn’t tell anyone. How could anyone believe that in those few moments in the bathroom when I would be about to begin my required washing ritual, an unknown force would grab hold of my mind and render my limbs immovable to my wishes? How absurd does that sound? Even though I haven’t been diagnosed with it, looking back I think I did develop a form of depression associated with the disorder. In my mind, I pictured myself immersed in black miry water with no light in sight. I felt I was moving in circles, with no idea as how to leave the place. Imagine doing that for real. And imagine doing it for so long, you almost forgot how long you had been in there.
OCD Part II
Anonymous
Experiencing OCD is like being stuck in a washing machine and not knowing how to end the cycle. You’ll keep doing the same thing over and over without knowing how to stop yourself from doing it. You might be wondering at this point, how is that possible? Just intend to end the task and stop your limbs from moving, right? Believe me when I say I wish it were so.
When I had to begin the washing ritual or prayer, some of the places where my OCD manifested itself, my intent was pretty clear to me: just stand, say the supplication and start. Once I stood and said the supplication, a thought would race through my mind and frantically whisper “What if you said that incorrectly?” Immediately following that thought would come the gushing anxiety, pinching my muscles and contracting my chest. “Yeah, what if I really said it wrong? What if my prayer is not accepted?” Before I would know, I would be starting the whole thing over again, all because of the possibility of a doubt being true. Reach step 1 and the cycle starts again.
And those form the essence of OCD: doubts and anxiety. You get a doubt, you feel overwhelming anxiety and in an attempt to subside the anxiety, you repeat, which gives you the most of fleeting of reassurances before the doubt comes afresh (or another doubt for that matter) and you hasten to repeat again. The fact that you can’t see a stop button to push is what makes OCD so debilitating. Time is passing, your muscles are screaming, your brain is reeling but you don’t know how not to give in.
Once, I was in an airplane when the time for prayer was in and I had to do the washing ritual. I got stuck in that cycle and was trying to pull out of it as always. Of course, it’s time consuming and I couldn’t blame the air hostess for impatiently knocking on the door for me to get out. But dealing with urgency upped my anxiety. I was being pulled by two forces in opposite directions: the need to get done quickly and the need to follow my doubt. Like when pulling cloth, it tore and frayed me. Like when pressuring glass, my insides were cracking with humiliation.
If there is anything to take away from that story, it’s this: be patient and compassionate with those who suffer from mental illnesses, because they feel profound pain from things others can’t see. Just because something can’t be seen doesn’t mean it’s not there.
Autism
Amy Millan
I am the mother of a 12 year old boy with PDD. All I can say after 7 years of receiving his diagnosis (after much parent advocacy) is that I’m tired. I’m tired of hearing “what’s wrong with him?”, “I thought autistic children didn’t talk”, “he seems normal to me”, “he should be able to do that at his age”, “what do you want me to do, prescribe medicine?”, “that’s not covered by your health plan”. There is no manual with steps to follow. Many pediatricians and school psychologists are not actually that well-versed in autism spectrum disorders. I guess most patients expect that when they receive a diagnosis, they get an opinion about a treatment plan. What we get with ASD patients is “well you can try this” and “this works for some kids”. There’s so much more work to be done. However, I don’t mean to complain. Living with a child on the autism spectrum, is a life enriching experience. I might be trudging through my daily routines and my son says something that he’s observed that I never even contemplated. He’s a little philosopher. If only he would talk to people other than myself. He notices details and questions life’s “understood social rules” in a way that makes me think why we do the things the way we do sometimes. He’s curious and creative, and likes to share his thoughts – when he’s comfortable enough to do so. He often expresses his wishes to make friends, yet when the opportunity arises, he turns the other way or says nothing. I could say so much more, but I need to help with homework and facilitate his play time. If there’s one thing I’d like people to know it’s that when you meet a child on the autism spectrum, don’t ask what their difficulties are, ask what their strengths and interests are. You might be surprised.
