As we officially enter into September, we can’t help but look back at this month and compare it to August 2014. This August was a busy month filled with events, not unlike past Augusts. While our social media pages were less inundated with videos of people taking the challenge, many families are still feeling the impact of this viral sensation. We continue to hear stories of what this means to people even three years later. Sabrina Jones is one such person and here she reflects on where she was in August 2014 and the journey her family has been on since.
Looking back at August 2014… One of my friends challenged me to do the Ice bucket Challenge. I’m not sure if they’re really a friend, though, since I was about 36 weeks pregnant! But, like a champ, I rocked the Challenge–not just once, but twice since my husband “forgot” to record the first bucket! At that time, I had no real idea what ALS was or why it mattered. “The Challenge” was something fun my friends challenged me to do, and I couldn’t wait to donate and challenge others! To be honest, looking back on that time in life, it was nice having no clue of what ALS is and does.
This past September 2016, my mother, Pattie Hamlin, was diagnosed with ALS after having some symptoms for about a year. This was a terrifying time for my family. We were all now forced to learn and know what ALS is.
After about a month or so of living in what felt like a deep dark lonely hole, my mother decided to reach out and be an advocate for ALS. Her first order of business was to help advocate for other ALS patients by encouraging others in our state to write to their congressman. My mother went above and beyond and collected about 3,000 signed letters!! She’s also helped get votes out so our Nokomis School District would win a Holiday Mannequin Challenge that got us $50,000 from GivIt that was split between ALS research and our hometown school district, Nokomis School District. My dad, Lester Hamlin, and mother also went to Washington, DC to again advocate for ALS patients’ needs. After that, they came home to lead about 150 family members, friends, and coworkers in the Walk to Defeat ALS in Springfield, IL. Our amazing team, Pattie’s Posse, was able to raise and donate $39,735. I’m sure I’ve left something out because it’s been a whirlwind!
Thanks to all the hard work of the many people who participated in the Ice Bucket Challenge and who also continue to advocate for ALS patients, a new drug is being released this month for ALS patients. This isn’t a cure, but it’s giving us a small glimpse of light at the end of the tunnel–to someday conquer this disease!
The diagnosis of ALS isn’t something we’d ever imagined. However, when life gave my mom lemons… she has turned around and made the best lemonade she knows how!
Growing up my chores included: cleaning my room, doing the dishes, putting the laundry away, and suctioning my dad’s throat cannula. The last chore isn’t typical of most kids, but my growing up wasn’t typical. My dad was diagnosed with Lou Gehrig’s disease in October 1993. I was born in May of 1995, and my dad is still kickin’ it, so my relationship with ALS has been longer than most. My childhood and teen years didn’t only include household chores that were different, but also different life lessons.
So, here is what I learned growing up in an ALS household…
I learned about how fragile life is.
Some of the first memories I have as a kid are of me laying on the grass, staring up at the sky, and trying to understand the concepts of life, death, and why we are on Earth. While this isn’t the typical worries of a kindergartner, these concepts are what I had to process through at a young age. I had to understand that life is a gift that needs to be cherished and shared with others. The idea that our time on Earth is fleeting and could change or end at any moment has been a focal point in how I choose to live my life. My sisters and I are all people who try to live each day to its fullest and achieve all that we can, which I know is a direct result of our understanding that life doesn’t always go as planned.
I learned about tenacity.
Tenacity, perseverance, and confidence are the attributes I have seen in my dad as he has battled ALS. Seeing these traits in him while growing up has shaped how I view the struggle of life, and to what extent I let life get me down. Life can throw curve balls at us at times, but doesn’t mean that we can’t stand back up after we’ve been hit. My life isn’t an easy walk, but I can stand tall knowing that nothing can happen where I can’t choose to persevere. My dad used to joke when I would have to give my life quote for school activities that it would be, “build a bridge and get over it,” which I did use for my high school graduation speech. My dad’s fight has shown me that each mountain has a valley, but that the trek back up the mountain is worth it. I know that life can be hard, but that in the grand scheme of things, our lives, even with ALS, are filled with blessings.
I learned what loving another person means.
Being in an ALS household doesn’t end with my dad having ALS. Having a parent who has ALS, also means that I have a full-time caregiver as a parent. My mom has stood next to my dad through all the stages as his mobility decreased, and has taken care of him 24/7 for over twenty-two years. My parents are a testimony that love and marriage aren’t only about the milestones you want to experience with another person, but also about the sacrifices you are willing to make for another person. My parents have sacrificed everything for each other and our family, which shows since they are still married in a society that has a divorce epidemic. My parents aren’t perfect, but they have, through ALS, set a standard for what love is.
And most of all…
I learned to laugh.
My family is always laughing. I would say that my parents have more reason than most people to be angry at the world, and to live a life of negativity. Instead, my parents chose positivity. With each hard time that my family has gone through, we have been there to pick each other up, and enjoy our time together by making fun of each other and the world that we live in. While I would say the downside to this is my crude sense of humor, I know that the upside of being able to laugh anything off and truly enjoy the company of others. Nothing can stop the laughter of my family, not even ALS.
Kelsey Lester, a recent graduate of Missouri State University, served as a communications and marketing intern for our Chapter last summer, and was our Walk to Defeat ALS Facebook Live correspondent this past June. Since getting her bachelor’s degree in May, Kelsey has moved to St. Louis, traveled to Africa, and is preparing to apply to law school.
Holly Pinto is the owner and director of The Body Therapy Center and School of Massage, Ltd. In Swansea, Illinois. She has been practicing massage and a variety of different therapies since 1989. We are excited to have her contribute to ALS Connect as a guest blogger.
The first time I heard the word ALS it was when my father was diagnosed when he was 78 years old. Soon after his diagnosis, we figured out that the “nerve disease” that my aunt had died of was actually ALS. And just recently, I lost my niece from this horrific disease at just 40 years of age. This post is for you the caregiver and you the person LIVING with ALS.
Being diagnosed with a terminal illness, especially one as progressively debilitating as ALS is, can cause deep fear and anxiety and enormous amounts of stress. But there are ways to combat those emotions and diminish that stress — research shows that individuals can make a quantitative change in their mind by actively committing to a mindfulness practice. As an educator of wellness and meditation for the last 25 years, I know first-hand that lowering your stress level and getting control of your mind and thoughts can make a huge difference in your life. In fact, some mindfulness practices can help with anxiety, insomnia, and have the ability to slow your heart rate down which in turn can make you feel more relaxed.
Our autonomic nervous system – which controls your heart rate and breathing among other things – is divided into two parts: one part, the sympathetic side, is wired for fight/flight and the other, the parasympathetic, for rest and relaxation. When we are stressed our bodies don’t know the difference between fleeing from a saber-toothed tiger or the worry that we are feeling on a daily basis. It triggers the same stress response. When we deal with stressful situations — sometimes many times a day — physical symptoms such as insomnia, anxiety, etc. result. The Body Scan helps to raise our parasympathetic side and lower the sympathetic side of the autonomic nervous system.
As you begin your mindfulness exercise and practice the Body Scan, it is important to think about a short mental statement or a deep desire and repeat it before and after your practice. It could be a desire to do something different or change something in your life. It should express your commitment to keep a powerful and positive force alive. It is not something that will happen in the future; it is something you believe is happening in present moment. It is profound and heartfelt. Yogis call this “Sankalpa”.
The Body Scan (Learn your body scan by having someone read the body scan to you until you can do it yourself. Go through each step very slowly, pausing to really feel each of your body parts)
Lay down in a comfortable position where you will not be interrupted for at least 20 minutes. You can do this exercise sitting up, too. Once in a comfortable position, ask yourself if you can make yourself 10 percent more comfortable and shift your body until you are the most comfortable you can be. Try to separate your limbs by keeping your legs spread apart and your arms and hands out to the side with palms up. Try not to move for at least 20 minutes. Take some nice deep breaths until you feel your body beginning to relax and settle down.
Setting your deep desire
Set your Sankalpa or deep resolve. For example, “I am safe and I am whole, I am at peace, I am already whole and already healed, I will achieve total health.” Repeat this over and over. Your resolve or deep desire isn’t coming so much from an intellectual place as much as a deep place in your heart. One of the intentions of your Sankalpa is to change your direction of thinking on a daily basis and change your perceptions to make your life more balanced and healthy.
Once you are settled bring your awareness down to your feet. Feel your feet. Notice the way your feet make contact with the floor. Are your shoes and socks covering your feet? What do they feel like touching your skin? Bring your awareness to the top of your feet, the bottom of your feet, the sides of your feet. Bring your awareness to your big toes, your baby toes. Notice heat, pressure. Any sensations you may feel in your body.
Notice your ankles. The front and back of your ankles. The inside and outside of your ankles.
Up through your calves. Get a sense of your calves three-dimensionally. Sense your whole calf. Not just the front of your calf or just the back of your calf.
Bring your awareness to your knees.
Bring your awareness to your thighs. The front of your thighs. The back of your thighs, the inside and outside of your thighs. Bring your awareness up your thighs and notice the connection of your legs into your pelvis.
Notice the weight of your pelvis as it makes contact with the floor, bed or mat.
A lot of things are happening in your torso: digestion, elimination, and breathing. Your heart lives in your torso, a little left of your sternum in your chest. What do you notice? Can you feel your torso spreading out as you breathe in and then shrinking back as you breathe out? Can you notice anything about your heart? If not, that’s ok. There are no expectations. If you find yourself getting confused by any of this just lay there and breathe in and out and let everything else go.
Bring your attention to your shoulders, your upper arms, your forearms, your wrist and your hands.
The skin around your neck.
Your face…can you sense the air moving in and out of your nostrils. Can you notice the air that is coming into your nose is cooler than the air coming back out? Notice your eyes and your eye lids that are closed. Your mouth and taste inside your mouth.
Notice your scalp and your hair.
Notice as much as you can your whole body and the sense of what it feels like to be in your whole body. Laying there not segmented out but a whole body. Lay there enjoying the stillness. If you can notice how the stillness supports you and surrounds you. When you are ready slowly begin moving your fingers and toes and when you are ready slowly open your eyes. Good job!!!
It takes courage to live in our bodies and to listen to our hearts in a still and quiet way. Take your practice slow and this month just practice your body scan anytime you are feeling stressed or before you go to bed. Let me know what you notice and what is changing in your life as you begin to integrate relaxation exercises into your life.
I grew up in Baltimore, MD and basically moved to the Midwest while attending Washington University for my undergraduate education. I left for a year and a half to get a Master’s of Science in Public Health at Tulane University. I followed this degree with Medical School at St. Louis University, neurology residency at Washington University, and neuromuscular fellowship at Washington University. I moved to Cape Girardeau in 2010.
Why did you decide to become a neurologist?
Neurology is a discipline where you try to determine where the problem is located, or localization. I enjoy this thought process and the neurological examination. Neurologists still perform a thorough examination and that is basic to treating patients.
How long have you been treating people with ALS?
I have been working with ALS patients since my neuromuscular fellowship training at Washington University in 2009.
How is ALS diagnosed?
It is diagnosed based on the neurological examination in conjunction with neurophysiology testing (electromyography and nerve conduction studies). The evaluation also entails ruling out other diseases that can mimic ALS such as autoimmune disorders and structural disease (problems with the brain or spine) which requires imaging of the central nervous system.
How is the ALS clinic at Saint Francis Medical Center different from a typical clinic?
The clinic is designed to involve multiple disciplinary evaluation-respiratory therapy, physical therapy, speech therapy, ALS coordinator, and case coordinator as well as an evaluation by a neuromuscular specialist. Patients are evaluated all in one area so they do not have to travel to multiple visits/sites to get the comprehensive evaluation.
What are some of the exciting developments in research in ALS?
Obviously the most important developments include new treatments. The FDA just recently approved of Edaravone (RadicavaTM) for ALS. Also, there have been exciting developments in regards to the understanding the pathology of ALS. The discovery of the NEK-1 gene and its role in the development of ALS. We need to understand how one develops ALS in order to develop effective therapies for treatment.
What are the most common misconceptions about ALS?
The misconception that ALS is caused by infections. There has been no evidence that if one gets an infection such as Lyme disease, someone is going to develop ALS. Also, ALS only affects muscle strength and motor activity. ALS has also been associated with mild cognitive impairment in about 20-30% of patients.
What is the most rewarding thing about working with people who have ALS?
The most rewarding experience is being able to help people maintain a high quality of life as long as possible. In the clinic, patients receive help with not only medications but more importantly they are seen by multiple therapies, which can help improve their quality of life (i.e. more comfortable wheelchair, supplementing diet, etc.). Also, it is rewarding to not only help the patient but help their caregivers with coping strategies and with discussing concerns and questions.
The ALS Association St. Louis Regional Chapter supports four patient centered, multidisciplinary, ALS-specific clinics which provide compassionate care in a supportive, family-oriented atmosphere. Visits typically last more than two hours, with patients and family members remaining in one room, while specialists orbit around them, consulting about ways to manage all aspects of health to ensure better quality of life. This multidisciplinary care model brings together a team of health care professionals specially trained to address the needs of people living with ALS, allowing them to receive care from each discipline during a single visit.
Do you have a question for Dr. Godbey? Or a topic that you would like to see us cover in an upcoming blog post? Email us at firstname.lastname@example.org — we’d love to hear from you! And, for more information on ALS and multidisciplinary care, visit alsa-stl.org.
Nearly three years ago, on August 4th, a peculiar news item showed up on our social media feed at The ALS Association St. Louis Regional Chapter. Someone had posted an article from Shape Magazine that described something called an “Ice Bucket Challenge,” where people across the country were dumping buckets of water on their heads and challenging three other people to do the same thing. It seemed like a fun, interesting way to raise awareness for ALS, so we shared it to our page and asked our Facebook fans, “Have any of you heard of this?” The rest of August became a blur of ice and water – it was incredible.
How it started
The ALS Ice Bucket Challenge – the largest viral social media craze the world has ever seen – was an organic movement started and carried by the community. It was not a planned fundraising or awareness campaign that The ALS Association created – it was instead initiated by people who were impacted by this fatal disease.
Chris Kennedy, a golfer in Sarasota, Florida, was nominated and took the “ice water” challenge, which was, at the time, not connected with any specific charity. Kennedy then nominated a family member whose husband suffered from ALS, Anthony Senerchia, which was the first time the challenge became associated with ALS and The ALS Association.
The “ALS Ice Bucket Challenge” spread quickly on social media, linking to another person battling ALS, Pat Quinn, whose network of friends overlapped with Pete Frates, a young Boston College Baseball player and team captain, who had been diagnosed with ALS in his 20’s. Frates involvement led to participation by Boston’s athletic community, where it really went viral as professional athletes helped it to cross over into the celebrity realm.
From there – well you’re familiar with the rest – it spread across the nation and eventually went global. By the peak of the challenge, which was somewhere near the third week of August, nearly 1.2 million videos – including those by Bill Gates, Oprah, George Bush, Jimmy Fallon, Shaquille O’Neal and others – had been posted to social media. The whole world was talking about ALS.
How it Helped
In addition to the incredible awareness generated by the challenge, the dollars raised made a huge difference to people with ALS – through programs that eased the physical, emotional and financial burdens brought on by the disease. It also re-energized ALS-specific research and accelerated the search for treatments and a cure.
Monies raised tripled annual research spending, leading to a greater understanding of the disease pathway and potential strategies for new therapies. Funding provided by Ice Bucket Challenge donations supported new treatment approaches in clinical trials, along with the discovery of new genes like NEK-1.
Currently, as a result of Ice Bucket Challenge funds, two antisense drugs targeting the two most common inherited causes of ALS are in or entering into clinical trials. We’ve formed two new global partnerships – ALS ONE and NeuroLINCS, and we’re actively funding 180+ global research projects in 11 countries.
At The ALS Association, we’ve increased efforts to educate our legislators about the vital needs of people with ALS and potential changes in laws that affect individuals battling the disease. We allocated Ice Bucket Challenge funds to develop an FDA guidance document, which helped to navigate the regulatory pathway for approval of effective therapies. This document has been credited in helping expedite the process of FDA approval of Radicava by reducing obstacles that would limit access to effective treatments.
Locally, donations from the Ice Bucket Challenge had an immediate impact on people with ALS in eastern Missouri and central and southern Illinois. It enabled us to increase the amount of medical equipment, nutritional supplements, home modification and adaptive devices for people with ALS, as well as doubled the amount of respite care provided to much-deserving caregivers.
We’ve doubled financial support to our area’s only ALS Certified Treatment Center, located at Saint Louis University, and strengthened partnerships with our affiliated clinics. And, in order to better serve our nation’s heroes – who are twice as likely to be diagnosed with ALS as the general public – we are proud to be participating in a National Veterans Administration initiative, collaborating with clinicians in the St. Louis VA hospital system to establish an ALS specific clinic in our service area.
Why it Mattered
While some people labeled the challenge a flash in the pan, a gimmick, or “slacktivism,” to the ALS community, it was no joke. Aside from the incredible awareness and the flood of donations, the unprecedented outpouring of support provided hope for many who were living with an ALS diagnosis. We heard from so many of the people we serve who told us that watching the videos made them feel like “the world was on their side, rooting them on.”
One gentleman in particular, Don Stewart, who had fought ALS for seven years, was so touched by the thousands of people posting their videos to social media that he decided to make his own video to thank everyone who had participated in the challenge. Don, a longtime banjo player before ALS robbed him of his ability to play, needed oxygen to breathe, but decided to go without it for the time it took to express his gratitude.
Don died in 2016 after fighting ALS for nine years. “He may have lost this one battle,” Don’s wife Saundra said, “but we’re still waging the war.”
What you can do
This August, we’d like people to continue talking about ALS. We know lightning doesn’t strike twice, but we’ve seen what an outpouring (pardon the pun) of attention can bring. We’re asking for your help getting people talking again — about support for families, about the need for research, about what a difference those buckets of ice water made.
During the month of August, we’re asking you to re-post your Ice Bucket Challenge videos and photos to your social media accounts using the hashtag #TBIBC.
With your post, please consider sharing a fact or two about the incredible impact that the ALS Ice Bucket Challenge has had for people with ALS and their families.
Thank you to all of you who participated in the ALS Ice Bucket Challenge of 2014 (and in subsequent years). You have truly changed the course of this disease forever. We look forward to seeing your photos and videos throughout August and appreciate your keeping the conversation about ALS on the forefront. We’re grateful for your support of people and families fighting ALS!
Today’s post is authored by Joan Sucher, who was diagnosed with ALS in early 2013. Joan and her husband, Tom – married for 46 years — have three children, Craig, Kate and Kristen, and seven grandchildren ranging in age from 14 1/2 months to 16 years. Joan insists that despite ALS, her life is “full, rich and blessed.”
By Joan Sucher
Each of us faces challenges in our lives and it can be very hard to see the goodness in those challenges. But to make our lives meaningful and impactful, we must be willing to look harder. And, as my decline has become much more apparent thru this past year, I think I have found my goodness, and it is in our grandchildren.
I would love to not have ALS. I would love to not be reduced to being an observer of my grandchildren as they witness my physical weaknesses and the realization that the things we used to do together are no longer possible. I would love that our youngest granddaughter, Harper, not remember me as the grandma who could not do Grandma things with her. But, I do not have the luxury of choosing this. What I can choose, is to believe that these children are learning positive lessons from my journey. How I am living this life is impacting them. Harper Jane is only 14 months old, but with our 6 older grandchildren, I have experienced real compassion, care, love and unselfishness. If nothing else, that is success. And, are these not the very qualities we want instilled in our children from the get go?
Mackenzie, our oldest, silently watches over me when we are together, she is quick to lend her arm but she never asks. She accepts what is happening and is there for me. Shortly after my diagnosis, Mackenzie and I were sitting at mass together, and as luck would have it, it was day of the blessing the sick. Our priest asked all who were sick or hurting to gather on the altar and he would pray over each of us. Well… I didn’t budge. My pride was not about to let me walk up there for all to see. But, Mac looked at me and said: “Grandma, you need to go up, it will be ok, it will be good.” Can you imagine the emotion I felt? Here was my Granddaughter telling me as gently as she could, that I was sick, I needed the help and it was ok. She was right of course, and so I did as I was told. Mackenzie accepts, she sees, she is impacted.
I have learned with Tyler, our oldest grandson, that still water runs deep. As a class assignment this past December, he was asked to write a Grown Up Christmas List. I was blown away. He wrote, “….When given this assignment, I knew what I wanted placed on top of my Christmas list, it is for my Grandma who has ALS.” As I read his paper, I wondered, how many times do we think our children are not listening, when, in fact, they are absorbing everything we say.. He concluded his paper by saying, “My Grandma would want us all to know we have all been blessed. She said life isn’t always what we want it to be, but what, in fact, it is. Her goal now is living life with a purpose.” Ty accepts, he sees, he is impacted.
Joseph, our third grandchild…. never speaks to me about my ALS, but he opens the door for me and holds out his arm for me to grab whenever near me. During the 5 days we recently spent together on vacation, I couldn’t help but think more than once, what a young gentleman! And, what really hit me hard…. He designed for himself a new, bigger, better baseball glove and had the ALS emblem sewn on it. He didn’t tell me, I just saw it one day on his glove. Joe accepts, he sees, he is impacted.
Abigail, our fourth grandchild….has a creative and artful mind. It is obvious she did not get that from her Yallaly/Sucher grandparents, so it is a treat for us to observe this in her. We were together with Abby as well a couple weeks ago, and though she never speaks of my ALS, she was a big help…helping to prepare meals, cleaning up and picking up. I didn’t ask and she didn’t say, she just did. And as a service project for school, she and her friend have taken it on themselves, to hold a lemonade sale stand and bake sales at different sites (like here today) with proceeds going to the ALS Association. Abby accepts, she sees, she is impacted.
Ali Catherine, our fifth grandchild, is probably the most active. The busier she is, the happier she is. She is a great big sister to her new baby sister, Harper. As with most children these days, she loves to read and I am amazed at how well she does for only 7 years old. When I want to talk to her, I will write on my iPad, but instead of pressing “talk”, she will read out loud what I have to say. A few months ago, while staying at our house overnight, she said: Grandma, I wish you could talk again, but since you can’t read to me, I will read to you. And, she did. Ali accepts, she sees, she is impacted.
Sydney is our sixth grandchild, our flower child…always happy, always smiling, always seeing the good. When she sees our car drive up in her driveway, she will run to my side. She reaches out her hand and walks with me into their house. Syd is four, and can read only a few words. But when I was putting her to bed one night at her house, she got out her favorite Dr Suess A B C book, and she started to try and “read” to me. When she would get stuck, she would say, “Grandma, write it on your iPad…” I would, she would press talk, hear the word, and then go on. I love these little people! I have to share one more story about Syd… As you all know, with my ALS, my tongue, mouth, and lips are unable to do their job managing my saliva. In short, I drool. Recently, Syd was sitting on my lap while playing Yahtzee with the kids. My drool got away from me and landed on her arm. She said: “Ewww, Grandma, yuck, your wetness got on my arm!” Then, she proceeded to get a napkin, wipe my drool off of her, then looked up at me, smiled, and proceeded to dab it off my shorts. Syd accepts, she sees, she is impacted.
And then there is sweet Harper, 14 months old…She and I speak the same language…we, coo, and, ah at each other. I have definite limitations with Harper, but I can hold her when I’m sitting, I can rock her, change her, feed her, and cuddle her. Harper accepts my limitations. I see, I am impacted by her innocence, and her unconditional love.
More than a few times, I have read Lou Gehrig’s speech as he announced his retirement from baseball. He shared some awesome thoughts, and I can relate to every point he made. I am not, however, a famous baseball player or a famous anything. But, what I am, is one proud, and lucky wife, mama, grandma, daughter, sibling and friend. So, I would like to quote Lou Gehrig, because he said it so perfectly:
“I might have been given a bad break, but I’ve got an awful lot to live for”.
Thank you all for listening, and walking this journey with us. God bless you!
This week’s blog post was originally published on thecaregiverspace.org.
A client who was dying once said to me, “Every day I feel as if I’m on one of those exercise boards that rest on a ball. Just when I steady the damn thing, it starts moving and I’m struggling again to balance myself. Why don’t people realize that’s what my life has become?”
I’ve heard similar descriptions for thirty years from clients and patients living with chronic and terminal illnesses. Many believed that not only did they have to deal with the effects of their illness, but also the unskillful acts of friends and loved ones who didn’t understand what they were experiencing. And that’s the purpose of this article: to explain it.
There’s a constant interaction of elements that contributes to mood unpredictability in people with chronic and terminal illnesses. From my experience, the most critical ones appear to be a lack of control, loss, physical effects of the illness or medication, and uncertainty.
Lack of control Imagine for a moment that your attitude about living is heavily shaped by people, objects, and activities. It could be an abusive boss, a landlord intent on evicting you, or a car that constantly breaks down. While oppressive, you could act. You could move on to another job, find a new apartment, or use public transportation.
But what if none of these choices resulted in acceptable consequences? If you quit work, you might not find another job in this economy. If you gave up your apartment, you might become homeless. If you couldn’t afford to repair or replace your car and there was no public transportation available, you’d be stuck in your neighborhood. A lack of control would, at the very least, make you disagreeable.
People who live with chronic or terminal illnesses constantly experience a lack of control. If I have an advanced case of CPOD (chronic pulmonary obstructive disease), I know that without proper medication and the constant use of oxygen I’ll die. On one side of the scale is death. On the other, the side effects of the medication, minimal movement, and oxygen. No contest. I’ll choose the medical protocol—not because it’s something I desire—but rather because it’s something more acceptable than the alternative.
Loss The feeling of losing something that gave your life meaning is profoundly upsetting. And it happens often with chronic and terminal illnesses. Unfortunately, the magnitude of loss is often thought of in terms of someone else’s sense of what’s important. An active person might think that no longer being able to walk is tragic, but the inability to knit is inconsequential. Yet for someone with rheumatoid arthritis whose entire life centered around knitting, the loss is devastating. Many chronic and most terminal illnesses result in life-changing losses. The ability to knit may disappear, but its memory is constantly present.
Physical Effects We think with our minds, not our bodies. But we know the relationship between mind and body is strong. In my hospice work, I’ve watched how the physical effects of a tumor changed a calm, peaceful man into a paranoid, aggressive person. While he sometimes understood that the cancer was changing him, during those lucid moments he realized that he had no control over what was happening to him. The ability to think and act rationally can be effected by changes in metabolism and the occurrence of pain. I’ve never had a client or patient who chose to be moody or act irrationally. There always appeared to be a cause. And often it was a physical change.
Uncertainty Most of us want predictability in our lives. If I buy an apple tomorrow I expect that it will taste similar to the one I ate yesterday. When the traffic light turns green for me, I expect cars to my left and right to stop so I can go through the intersection without being hit. But what if that apple I had yesterday tastes like an onion today or it became optional for anyone facing a red light to wait until it turned green? I could stop eating apples and wait until no cars were present before going through a green light. But what if the unpredictability spread into other areas of my life? My anxiety would become palpable. We may want some uncertainty and a bit of spontaneity to spice up our lives, but it’s predictability that allows us to function sanely on a daily basis.
For many people with chronic or terminal illnesses, predictability may be an illusive state of being. One day, the illness is controlled either by medication or who knows what, the next day it comes on with the power of a sledgehammer. On good days, although there’s jubilation, there’s also the fear that the reprieve will end. On bad days, there’s the fear that it will persist and never relent. Wondering if the pain will ever stop might make it difficult for someone to be supportive when a friend complains how his wife never lets him choose the movie they’re going to.
For someone with a terminal illness, there is certainty, but it’s not desirable: there’s the knowledge that the illness will continually progress. The uncertainty involves the course it will take. People with terminal illnesses often wonder how much pain they will have to endure or the extent of reduced abilities until the body just gives up.
The interaction It is difficult to prevent the effects of any one of the above elements from having a negative impact on relationships. Living with all of the elements, and quite often having to deal with them simultaneously, is mind-boggling. Experiencing chronic and terminal illnesses is not a static event. It’s constantly changing as each of the elements takes its turn effecting one’s mind and personality.
Some very wise people maintain that illness doesn’t necessarily have to control the mind. By understanding that pain and suffering aren’t internal, but rather our reaction to events, the effects of chronic and terminal illnesses can be reduced or eliminated. As a Buddhist for most of my adult life, I would like to believe that. But as someone who has been involved in the lives of people who have chronic and terminal illnesses, I know the difficulty in believing in a concept when all you can think about is the loss of something that was critical to your happiness, unrelenting pain, or a future envisioned, but unobtainable.
What I have found that’s comforting to people I serve, is the expression of acceptance and compassion for what they are experiencing. The anger and sarcasm vented in my presence is rarely about something I have done (I certainly hope not!). But rather, it’s the effects of trying to balance that board on top of the ball. As a monk once said to me, “We do the best we can, given the circumstances of our lives.” So when someone you know who has a chronic or terminal illness appears to be cranky, unappreciative, aggressive, or distant, it’s not about you. The balance is probably out-of-whack.
About Stan Goldberg Stan Goldberg is the author of eight books in four languages. LESSONS FOR THE LIVING: STORIES OF FORGIVENESS, GRATITUDE AND COURAGE AT THE END OF LIFE is his memoir of being a bedside hospice volunteer for six years while battling prostate cancer; and, LEANING INTO SHARP POINTS: PRACTICAL GUIDANCE AND NURTURING SUPPORT FOR CAREGIVERS, focuses on caregiving for loved ones who have a progressive or terminal illness.