Charles Mickles

@charlesmickles | contributor
Super Contributor

What It's Like To Live With the Unpredictability of Parkinson's

Days with chronic illness can be unpredictable. Days with Parkinson’s Disease (PD) can be just as unique and uncertain as the disease itself. In addition to the normal uncertainty of everyday life that we all must face, you also have the added “fun” of never quite knowing how you will feel. Most days, my treatment manages PD very well.  Sometimes, however, a conversation similar to this occurs: Care Partner/Friend: You doing okay today? You seem to be struggling a little? Me: I’m okay, just feeling a little ‘off’. Care Partner/Friend: Why are you having a rough day? Something happen? Me: I don’t know. It is just one of those ‘off’ days. One of the most frustrating aspects of Parkinson’s Disease is the uncertainty. It is often called the “snowflake disease” because each person with PD has a different experience. More than just dealing with tremors, people affected by PD can exhibit a range of symptoms including: anxiety, pain, cognitive issues, fatigue, sleep disorders, loss of smell, stiffness, slow movement, speech changes, and a range of other symptoms both seen and unseen by others. I am never quite sure what a day will hold or how I will feel, which makes planning and participating in the normal, everyday activities challenging. Sometimes you can be given medicine that helps you regain so much of what this disease has taken. For me, it occured after just a couple of days taking it, and I felt almost like my old self again. Able to move better, tremors controlled, stiffness gone, walking and speaking improved – I felt great. But, just as each person’s experience living with PD is different, so too, can daily differences in treatment effectiveness manifest themselves differently from person to person. The medication was immediately effective and helped me manage the symptoms of my PD. However, there was one catch: I had to stick to a regiment of pills, taken throughout the day, and over time, these doses would most likely need to be increased and adjusted because the medication would gradually lose its effectiveness. In addition to this, how well the medication managed my PD symptoms varied from day to day. Sometimes it would not work, and other times it wouldn’t work as well or as long. But when would these times come? How would I know how I would feel from day to day? It turns out these times would be as unpredictable as the disease itself. I refer to these times when my symptoms aren’t as well-managed as “off times” or “off periods.” Off times can occur for a multitude of reasons: Missing a dose of your medication Taking a dose too late Taking medication with certain foods Fatigue Stress How long you’ve had PD Or for some reason you are not even aware of These off times are unpredictable, can come on with little or no warning, and their unexpected nature can be very frustrating for those battling an already unpredictable disease. In addition to this, these off times can manifest in a multitude of physical, mental, and emotional ways from tremors, to stiffness, to brain fog, to balance and speech issues. Just like every person who has PD has a different combination of symptoms, off times manifest differently in different people, and each time, it could be a little different. Honestly, I was not even familiar with off periods when I was first diagnosed and could not understand why I was feeling better some days and not others. This led to some frustration, anxiety, and confusion, and I wish I had known to look out for off times and their causes sooner. Knowing about this definitely would have helped me understand and prepare better for this journey. These off periods are not just hard for the patients; they can also be challenging for care partners and those surrounding us. Since symptoms often occur unexpectedly, individuals with PD might not even know from minute to minute what they can and cannot do. Those surrounding this person can be just as frustrated as those battling this disease, and it can be hard for them to understand why you can’t do an activity now that you could earlier in the day. For each of us, it is important to educate and  advocate for ourselves. You can start by keeping a log of what your day is like and note when these off periods occur. Talk to your doctor, and work with them to find an adjustment or dose that will help limit these times when you are more symptomatic. Also, give yourself the freedom and grace to stop, rest, and take a break while you give your body and the medication time to “catch up”. Yes, medication can be a wonder and a life-line that has helped us live better with this very challenging and unpredictable condition. Unfortunately, just like the symptoms of this disease, it is impossible to totally eliminate off times, but with the right communication and treatment, you may just be able to negate or greatly reduce these frustrating periods.

How Parents Can Make Educated Choices About the COVID Vaccine for Kids

Making decisions as a parent is often very challenging. As parents, we stress and worry about how this will affect our children, our relationships with them, their future, their wellbeing, and so many other issues in life. While we sometimes might not have all the facts, we still strive to make the best decision possible. So, what does a parent do when there are so many competing “news facts” and “opinions” about a specific issue, like, let’s just say, COVID-19 vaccines? (I know, I know, this is such a calm, undebated, non-issue.) How in the world can parents navigate the “mess” that is this issue, to make the best decision for their child? Information, misinformation, facts, and opinions flood the media, social media, and daily conversations for just about everything in our world, but nothing has shown this more clearly than the current pandemic. People argue about the “latest development,” the YouTube “doctor,” a website their friend found, the latest CDC guidelines, or the latest new “cure” for COVID-19, and share, post, repost, and comment on things that may or may not be legitimate. Each person has become a junior detective and expert that has a “corner on the market” of facts, usually meaning facts that support an opinion they have formed. As these things are shared, with each new development, discovery, and change in policy, a cacophony of noise fills the airways and screens with all sides shouting that their evidence and conclusions are the ones to follow. Now, the vaccine, which has become a hot button of its own, is now available for parents to get for their children 6 and older, and will soon be available to 5 and under. In this swamp of information, parents must now decide how to proceed for their children. With fear often peddled on both sides of the issue, I can only imagine how challenging this decision must be for parents who really just want to do what is best for their child. Add to this the pressure and shaming, especially on social media, that often already occurs among some parents (let’s talk about all-natural diets, organic foods, cloth diapers, discipline – need I say more), and this decision becomes even more of a challenge. If you look on Facebook and even listen to conversations, you know this to be true.  Between the pressures and trying to sift through all of the information, for parents, this has got to feel like a nightmare. As a parent, on the tail end of my children being at home, I would simply offer a few words of advice: 1. Pause, take a breath and do your research — from reputable agencies and scientific sources, not Facebook, YouTube, or the mom or dad down the street who may or may not know what he/she is talking about. 2. Don’t let fear push you in one direction or the other. No one can tell you with 100% accuracy what will happen if you do or don’t get the vaccine for your child. 3. Remember, this is your child, no one else’s, so make the decision that is right for your child and family. My children are 18 and 20 now. As adults we let them decide, and they chose to get the vaccine because of my chronic health issues and how sick I got the first time I had COVID. I have other family members that chose not to. Both did what they felt was best, and I try to do what is best for me. As parents of young children trying to make this determination, use these same principles to guide you and your family, because most parents I know really do want the best for their children.

How Loss and Illness Changes a Marriage

With tears in her eyes, she looked at me and said, “I want the man I married. I want him back. Where is he?” Full of anger, I looked at her and simply said, “The man you married does not exist anymore, and I don’t think he is ever coming back.” With that, I stormed out of the house — neither of us sure if I would ever return. It had been a hell of a few years. There had been some amazing highs, but more devastating lows were about to come. My wife and sister had just given birth to my daughter and nephew. My wife’s pregnancy had been extremely hard, she had been in and out of the hospital five times, but I was a new daddy, my wife was doing better, and things seemed to be heading up. Little did we know our world was about to change drastically. Three months after her birth, my daughter had to be hospitalized with RSV (respiratory syncytial virus). The fear and anxiousness we felt at this turn of events was quickly overshadowed on the second night of our stay when we received a call telling us that my sister was downstairs in the ER with severe headaches. As tests were run, brain tumors were discovered. It was like getting sucker-punched in the gut. Fear, anger, sadness, worry, discouragement filled us, and we knew everything was now changed. As a person and family of faith, we prayed and hoped for her healing. We rallied around her and did everything we possibly could to help, working to follow all the doctor’s recommendations. But healing this side of heaven was not the plan, and six months later, she passed. She was one of my baby sisters, only 16 months younger than me. There was not a time I could remember when she was not there, and now she was gone. God was not supposed to let this happen. I was angry, sad, hurting, and questioning even my faith. How could God let this happen? Unfortunately, we weren’t done yet. Three months later, we received the news that my dad had stage 4 colon cancer. My other sister came to see me that afternoon, and I only got two words out before I was crying. On the sidewalk of my school, we stood there in tears holding each other. It was happening again; what were we going to do? By this point, our family was reeling. God, what are you doing? My anger, frustration, and hurt were all-consuming. I remember simply looking to heaven and saying, “Dear God, not again! Don’t do this to our family again!” To the outside world, I looked OK and seemed to be managing things well, holding to my faith, and making it through. Inside, though, I was done. I was ready to give up my faith, quit my job, and even throw away my family. I was so mad and frustrated at life, especially after all I had already walked through with my health. I was just done. What was the point? If this was what life was about and where my faith got me, I didn’t want it. I had always been optimistic and a person of deep faith. Walking through many trials and struggles I’d kept a good attitude, a caring heart, and deep faith. But that was over now. Tired of suffering, tired of my family hurting, and tired of the pain, I was angry and just did not care anymore. Crap was going to happen, so what did it matter? Only those living with me truly saw this because I was pretty good at wearing the mask. I knew the right things to say and do, but eventually, that acting caught up with me, and the anger and frustration I was bearing finally broke through. This was the straw that finally broke the camel’s back — the moment I finally broke. The stress our family had been under financially and physically was taking a huge toll on us and our marriage, both mentally and emotionally. Running on fumes and emotionally exhausted, an argument ensued. Honestly, I can’t even tell you today what that argument was about, but the anger and vitriol pouring out of me was astonishing, even to me. This was not the person I was — but this was what was coming out. She sat on the bed looking at me, hurt, with tears, simply wanting the man she married, but at that moment, I could have cared less. I was tired of being the happy warrior, the strong one, the one who kept getting up after I was knocked down again and again. When she said that, all I could say was, “The man you married does not exist anymore, and I don’t know if he is ever coming back.” The hopelessness and rage I felt was destroying our family. Tired of fighting and dealing with the crap of one thing after another being thrown at us, I was finally ready to give up. Hearing myself say this to the woman I loved destroyed me. How and why my wife stayed with me I will never know, but somehow, she did. Somehow, she found the love and the strength to keep loving me and caring for me in the wake of these devastating life events. That year changed me. Some realities of life sunk in, and I realized that some things you just can’t fix. I wish I could say everything went back to normal, and I once again became my old self, but I did not. I did heal, and my wife and I found a new place of love, care, and commitment. I found a renewed and, in some ways, deeper faith, but that year changed the person I was and changed my perception of life. It gave me a soberness I had not had before, and while I had a deep appreciation for the time and people I had in my life, there was hurt and wounds that continue even to this day. Some of these same feelings I dealt with again when I learned of my Parkinson’s diagnosis, and I would be lying if I said, as hopeful and optimistic as I am, there are not still days of anger and frustration, and days when I want to give up. Walking through my previous struggles has given me the perspective and strength I needed to walk this current path, hopefully, a little better, but it is still hard, and still hurts. While my wife never did get back the man she married, this new man has learned and grown, and we have found that place of peace and love — at least most days — that we need as we walk through this latest trial. I am not the man she married, but she is not the woman I married either — which is good — because I am not sure those two people would have survived this. Our relationship was forever changed that year as we found our footing to begin a fresh start in the wake of these tragedies. I realized that these events shaped me and made me and our relationship what it is today. I still battle many of the same things I battled that year, and sometimes it is hard not to be that person again. It took understanding and sacrifice to walk this path — sacrifice born of a special and deep love and commitment. Even when I was pushing her away, she held me close and helped me heal. That is the loving sacrifice that so many make who help us on our journey. If we had let it, anger and hurt would have destroyed us, and at times we let it, and that is the true choice we each have as we walk the path of grief, loss, trauma, and trials — it can be what separates us or what bonds us together, but regardless, it will change you, just as it changed me. There is forever a hole where my sister lives now. Some days it is more painful than others, but I have finally learned how to live with it day by day. After your loss, your trauma, your diagnosis, you will never be the person you were before, but only you can choose the person you will become, and only together can you and those around you choose what your life together will look like. Yes, these things will change you, but just like anything in life, what we choose to do with it is what really matters.

Today I’m Done Being the Inspirational Chronic Illness Warrior

Today is one of “those days.” Really, I seem to have had a few weeks of “those days.” For over 30 years, I have been “the man full of hope.” The one ready to fight and tackle the next challenge before me – told by many how encouraged they are by me and how hopeful and strong I am in the face of my constant pain and health struggles. But today, I am feeling anything but strong, and I am tired of seeing the bright side. Today I just hurt, and in reality, I am just so tired of the pain and struggle. Today, I am just done. Perhaps you have had a day, or days, like the one I am having. You know the days I am talking about – the days when you wake up already exhausted, worn from the never-ending fight and struggle, and just tired of it all. I have been referred to as the “Happy Warrior” and the “Parkinson’s Preacher,” and been described as inspirational to others, because of the joy and hope I have walking through life, battling multiple chronic illnesses, and never quitting – never giving up. If you have read many of my other articles, blogs, or books, you know this to be true. Many days, that is where I am. Even though I know my struggle will be lifelong and my health will continue to decline and spiral downward, I have chosen to see the good and chosen to approach with hope the future that is before me. But that is not the case today. As my pain has steadily increased, new symptoms have cropped up, and I have seen signs of decline. My vision of the future has become clouded, and honestly, all I see is a dark and painful future. I see the strain it is putting on my relationships, and the distance my mental, emotional, and physical state is putting between me and others. I feel alone in this fight. Many sympathize, but few truly understand, and in all honesty, today, I am tired of talking about it and explaining it to others. I lack the motivation to do the things that just last month I was so passionate about, and I look with dread at the thought of 10-20-30 or more years of fighting this body. I don’t want to be inspirational. I don’t want to be hopeful. I don’t want to find joy. Today, I just want to give up. Today, I am just tired. Today, I am in pain. Today, I am done being the “Happy Warrior” and the “Parkinson’s Preacher.” Today, the mental and emotional aspects of this fight have gotten the better of me, and I am discouraged, depressed, and tired of being strong for myself, and strong for everyone else around me. In my battle with Parkinson’s, rheumatoid arthritis, and so many other struggles, days like this are a reality, and I am realizing that days like this need to be discussed, if for no other reason but to vocalize the struggle I and so many others face. Some days, there is not a “positive” or “inspirational” thing that can be said or done, for they all seem hollow and shallow in the face of pain that never stops. Today is that day. Today, I have no positive thoughts, inspiration, or even strength to share. I simply have my struggle, and the reality of where I am.  The “Parkinson’s Preacher” is just having a rough day. Days like this happen in our battle with chronic illness, and that is just the reality we must live with. Maybe the only reason to share this is to simply give another person’s struggle a voice, and let them know that we all have days like this. Today, this is the place where I find myself, but that is OK because I will keep walking, and force myself to keep facing the future and pray that soon, I can once again face tomorrow with hope.

Learning to Live With Regret After a Sibling Dies of Cancer

It had been a long day. We had spent most of the day working outside, helping my sister get her flowerbeds ready, and I was beat. Our plan was to go home, clean up, and come back for dinner. When we got home and cleaned up, I was exhausted. She called me and asked if we were heading over. After a pause, I said, “I’m just too tired, I think we will skip tonight and catch you later in the week. I love you. Bye.” And with one sentence, I missed the last opportunity I would have to spend time with her. Our Saturday was full. It was a time of family. We spent the day, as family and friends, helping my sister and brother-in-law take care of things around the house. While we worked outside, my wife had spent the day inside with my sister and my daughter and nephew, playing and visiting while my sister recovered from her latest treatment. It was a good and fun day helping her accomplish things she simply did not have the strength to do. Her cancer battle was beginning to take its toll, and she just could not keep up with everything. The last six months had been a whirlwind. After the diagnosis of brain cancer, treatment had begun swiftly as we rallied around her and her family, supporting them on this new and difficult journey they were walking. It was a terrifying and stressful time, but also a time that brought us together as a family in ways we had not been before. We looked for ways to spend time together and for those six months, we were inseparable. But not that night. That night I was tired and just didn’t feel like going out again. I was counting on the fact that I would have other days with her, but I did not. When I got the call the next morning that she was in the hospital and not responding, even then, I did not fear the worst, and assumed like many things there would be more opportunities in the future, but I was wrong. By the time we got to the hospital, she was barely responding. In so much pain and on so many medications, she was out. We tried to interact but barely received garbled groans in return. When the doctor came in, it was not good news. The tumors were growing and most likely she would never wake up. Our family was devastated, but on top of that, guilt began to wash over me. Why had I done it? Why had I chosen rest over time spent with her? My last conversation had been to say that rest was more important, and that I did not have time to get together. In a sense, I felt like I had denied her dying request, and it was a decision that haunted me for years. I had squandered my last opportunity to spend time with her. These were the regrets and guilt, whether justified or not, that were going through my head. Mentally and emotionally, I beat myself up over and over again, and felt as though I had let her down, and that I had not been there for her when I could have been. In some ways, I condensed our entire relationship down to one singular event and beat myself up for being selfish. In reality, this guilt and these feeling were not true and honestly were not fair to me or to our relationship. The regret poisoned my soul and for years I could not forgive myself. In reality, though, there was nothing to forgive. Me not going over there did not negate the love I had for my sister, it did not negatively define our relationship, it was simply a choice, just like the hundreds of others I made each day. Do I still regret missing that time? Absolutely, but I’ve learned to give myself that grace, and I have forgiven myself for that choice. Living with regrets can be hard and places a burden on us that we unfairly bear. If we are not careful, it becomes the entirety of our relationship and overshadows everything. It also focuses us on negative instances, instead of focusing and remembering the good and positive things that made our life and that relationship so wonderful. While these regrets can have the positive effect of driving us to treasure each moment and the time we are given, if left unchecked and not dealt with, these regrets can grow into anger, bitterness, and depression that can greatly impact our lives and the lives of those around us. We all miss opportunities we could kick ourselves for later, but even in these missed opportunities, we must give ourselves the grace and forgiveness to see the events for what they are and treasure the memories and times we had together. Sometimes, the greatest gift we can give ourselves and others is forgiveness and grace, and until we do that, we can never truly move on and begin to heal from our loss. Don’t let a regret or mistake define and encompass the relationship that was so special to you. Your relationship is more than that regret. Honor their memory by remembering this and focusing on all that was good and special about this person that no longer walks among us.

Coming to Terms With a Parent's Chronic Illness: A Child's Perspective

by Charles Mickles, Alyssa Mickles, and RJ Mickles “I’m scared all the time because I don’t know what the future holds. We don’t know when we will start to lose you, and if you will forget us. Sometimes I just feel kind of numb.” I sat there, for the first time, really feeling the fear, pain, and sense of loss my children were experiencing. It had been two years since we heard those four little words, “You have Parkinson’s disease.” It was a diagnosis not just for me but for my entire family, and finally, I felt strong enough to ask my kids how they were really doing. It was a conversation that brought laughter and tears, but more importantly, helped me to realize for the first time that this path was “our journey,” not just mine, and just like me, they were dealing with and coming to terms with a lot. Most people who get a diagnosis like this are older, and their children are not so young. My children from a very young age had to face this reality, and as a father, I not only have to walk through and deal with this myself, but I have a family to consider. Unfortunately, this was not the first time my children had to come to terms with their father’s struggle. Having battled rheumatoid arthritis from the age of 15, my children have never had a dad that did not have some physical struggle, and they have never known what it was like to have a dad who was not sick. So, when this latest diagnosis came around, once again my children were faced with a new reality. One that they should not have had to face for years to come. One that their friends did not understand. One that their life had not yet prepared them for. One that would in many ways define the rest of their lives. And one that even I could not fully comprehend. Just like I had to come to terms with this new battle, my children also face a similar challenge. As a child, how do you deal with this? How do you face the future that seems so uncertain? This was the question that my children had to answer as they faced a new reality each and every day. As I talked with my children one night, I wanted to know how they were walking through this – how they were processing and dealing with the struggle and uncertainty of my health. Through this conversation, we laughed, cried, expressed anger, and just loved one another. I have no idea how long we were talking and reminiscing, but I will always remember it as one of the deepest and sweetest conversations I have ever had with my children. It was a conversation we needed, and one that forever changed how I viewed this path we were on. What’s been hard for you as a daughter/son? “Watching you go through this and there is nothing we can do. I’m scared all the time because I don’t know what the future holds. We don’t know when we will start to lose you, and if you will forget us. Sometimes I just feel kind of numb.” You said you can’t do anything, but is that really the case? “Well, we can do something. We can love you, but it does not seem like it is enough.” What else has been hard? “The unknown. We do not know what will happen to you and when things will happen. Sometimes the future looks dark, and it is hard to deal with.” What has been your biggest disappointment? “Not having anyone who understands that we can talk to because I am so young. Sometimes we worry that your life will be cut short, and we won’t be able to do everything we want or need to do with you.” Have you missed out on things? “Yes and no. I mean, I missed out on just being a kid, and not having to worry about your health. It is always on our minds, and we worry about how you are doing.” How do you deal with it? “Sometimes we get frustrated and upset, and we take it out on those we love. Sometimes, I ran away from problems. I dodged things and tried to avoid it. Many times, I internalized it (and sometimes still do). Lots of times, we just don’t talk about it, but when we do, we have a few around us who help us and take time to talk with us. One good thing is we have tried to make all the good and happy memories count – going to NASCAR races, doing Build a Bear (at the age of 19), and dancing with you (my dad) to BTS (yes, it is as funny as it sounds). We just try to make memories and make today count.” How do you face tomorrow? “Sometimes we don’t, and we just try not to think about it. Other times, our friends and people around us try to support and help us. Basically, we just take it one a day at a time.” How has it made us better? “We don’t take things we do for granted as much — like talking to you and getting advice. But each day, we deal with it together.” What would you tell someone else? “Treasure and hold on to the friends and family around you. Don’t bottle up your feelings – we both, in different ways, pushed our feelings away until we broke. We did not talk about it and just let it keep building up until we broke down. We sometimes avoided being around you, because it hurt to see how sick you were, and all it did was make our pain harder. Find someone to talk to about this and find others to help you deal with it.” How has humor helped you? “Sometimes, it helps me hide my pain. For a moment, it helps me feel I can get through it and it will be alright, even when it is hard. It reminds me of how you have always been.” What have you learned? “Life sometimes sucks, but we cannot focus on all the bad stuff. Sometimes, I don’t know how the hell my dad does it (I would be in a dark hole and would not get out of bed). Some days, seeing my dad go through this makes me think I can go through anything, and bad things can happen but good can still come out of it. Some days it is hard to see how this helps others, but I know our story has.” By this point, we all had tears in our eyes and just spent a few moments hugging, thankful for the time we had spent sharing with one another. As a father, it ripped my heart out seeing the pain, doubt, fear, worry, and sorrow this journey was causing my children. As a father, there was also immense love and pride in seeing how strong my children truly were. As we finished talking and hugging, I poked them both in the side, tickling them. They jumped, we laughed, and I simply said, “I love you both, and I am so proud of you. You will never know the blessing you are to me, and how thankful I am to be your dad.” For the first time, I really saw what my children were walking through, (and my wife, but that’s another story). It has changed how I am now walking this path, for now, I understand, I am not alone, because they (my wife and children) really are walking this same path with me because “I” do not have Parkinson’s disease, “We” have Parkinson’s disease, and together we will walk this path, no matter where it takes us.

The Gag Gift That Gave Me Hope After My Sister's Death

We had just gotten home and the doorbell rang. My friend and his family were standing on the porch with nothing more than a simple brown paper bag. He looked at me and quietly said, “I heard you needed some support.” I opened the bag, reached in, and what I pulled out made me laugh for the first time in three days. That simple gift reminded me there was hope and I would laugh again. The days had been dark and long. In fact, I cannot remember a darker day in my life. For two days, we had gathered around my sister’s hospital bed. Unresponsive and declining, the cancer was winning. Slowly she was slipping away, and there was nothing we or anyone could do to stop it. For six months we had held out hope. We had prayed and sought out any treatment that might stop this devastating disease. We knew at some point it would win, we just were not expecting it this soon. For two days, we sat, and hoped, and prayed for a miracle — but the miracle did not come. A young mother of 26, with a young son and husband, was quietly being taken from us — and there was nothing we could do. By Monday morning, it was obvious our time was short, and we knew we would have to say goodbye. As we gathered around her bed, we hugged, and cried, and prayed, and at 1:30, as she took her last breath, we said goodbye. Nothing before or since has rocked me to my core as this did. It was like a sucker punch to the gut. As I stepped out of the room, I collapsed in tears, broken by the loss before us. We drove home in silence, my eyes so dry they burned, but with no tears left to shed. I felt numb and almost as if I was in some nightmare. Exhausted, discouraged, and heartbroken, I could not see any light, no bright future, and no hope for tomorrow. As the news spread, we received calls, texts, and messages of sympathy, but I did not want to talk or respond and quietly withdrew into a world where all hope seemed lost, all joy seemed to be absent. It was in this dark moment that the doorbell rang, and there stood my friend. In his hand was a simple, brown, paper bag, that I later discovered was full of laughter and hope. As he handed it to me, his wife quickly disavowed any association with it and simply said, “This was his idea.” I opened it and as I pulled out the jockstrap (unused and still in the box), he simply said, “I heard you needed some support today.” I stood there looking at it for what seemed like hours, and then just doubled over in laughter. It was the first time I had laughed in days, and it reminded me that I would laugh again and that there was hope. Not hope that my sister would magically be healed or that I would no longer feel pain, but hope that this was not the end. Hope that there were still bright days ahead and that through my grief, I would learn to live once again. It brought me hope that we would find our way through this, even if we could not see it at the time. I will never forget this act of love and courage as long as I live, for it was the first of many steps in the healing process after my sister was gone. I don’t know what possessed him to do this, or where he got the idea, but he was the friend I needed when I needed him the most. The courage, and also the understanding of my grief that this simple act showed, demonstrated the depth of our friendship and the understanding of what I needed most as a friend. I don’t think this man will ever understand how he helped me, but his love and “support” on that day, and in the coming months, saved not only me, but my family, and even my ministry and career. Too often, we are so worried about what to say or what to do when someone is grieving, but in reality, the most important thing we can do is be there for one another, hold each other up, and walk beside each other in the healing process. I am not saying to show up at a funeral with a jockstrap, but don’t be afraid to go out on a limb and help a friend when they are grieving. Who knows, you just might be the jockstrap that gives them the support they need to find hope, joy, and peace — and when you do that, you will help them face tomorrow.

Experiencing Burnout When You Live With Chronic Illness

I could not keep going like I was going. Exhaustion. Daily Pain. Stiffness. Apathy. Depression. Mental fatigue. Trouble concentrating. Uneasy and upset stomach. Frustration. Stress. Sleeplessness. Tired of the struggle. Some days ready to quit and give up. Was all this from my arthritis or from burnout at my job? Some of these phrases could describe both. Did one lead to another? Did both contribute to the place I am in? Am I burnt out, just in pain from chronic illness, or both? All I know is that I could not keep going like I was going. It has taken me over a year to admit this, and sometimes it is even harder to say. I loved my job – it was what I had always wanted to do. I was the elementary principal at the school where I grew up. I never had a boring day (if you have ever been around elementary children, you know exactly why). I worked with great people (for the most part), and it fulfilled me, especially when I was able to help a child or family on the path of education. But like with any job, there were stresses – stressful situations, stressful people, stressful times (especially with COVID). On top of that, there were long hours, problems popped up like a whack-a-mole game, and I had more tasks and responsibilities than any one person could possibly handle. As more and more got piled on me and I struggled to keep up with the workload my boss put on me, I could feel it. It was starting to happen. Little by little, I was getting burned out. At the same time, because of my arthritis, every day was a struggle. I was in pain from the moment I woke up until after I fell asleep. Everything took extra strength, energy and effort, and many days I was exhausted before I even left the house. Pushing and pulling myself through each day, I would come home and collapse – so tired of fighting my body. I could feel myself getting burned out in my fight with my body and arthritis – I was burnt out of having a chronic illness. I could feel myself losing motivation. Sometimes the mountain of tasks seemed overwhelming. I often felt defeated, alone, and could feel my cynical and sarcastic side rearing its head. Some days I would literally drag myself out of bed because it was becoming hard to face another day. My family, especially, saw me become more irritable and frustrated, something my daughter commented on a few months after I had made a change (“Dad, I don’t think I have ever seen you so relaxed and happy.”) I rarely slept, a symptom of both my rheumatoid arthritis (RA) and an overloaded, stressful work environment. Consistently performing, concentrating on tasks, and simply just finding the energy some days to just get it done were all things I was experiencing – and sleeplessness was not helping that. All of this added up to something I was not ready to admit. I was burnt out. Because I loved what I did, that was a hard one to admit, but what were the real reasons I felt burnt out. Was it my health? Was it job stress? Were they feeding off of each other, making the other worse? Would I feel this way if I had a less stressful job or was in a healthier body? This was my struggle, and until I stepped away from that job, I did not realize how much both of these things influenced the other. Stress and lack of rest are two of the biggest contributors to pain. Pain is exhausting and zaps your energy making getting things done even more challenging. This in turn leads to more stress and longer hours with little rest while you simply try to keep up, to say nothing of getting ahead. As you walk this vicious cycle, you get more exhausted, get further behind, become stressed out, as pain fills your body, you throw your hands up wondering if this “Hamster wheel” you are on will ever stop. The connection between RA and burnout is real, and while I am not sure if one causes the other, they certainly both energize and feed off each other. When you have a chronic illness, sometimes it is hard to see if the burnout is what you are doing, or if the burnout is because of the body you must do it with. It feels like you are always fighting on two fronts, and your body does not always cooperate and often makes things more challenging. It is at those times more than ever, when you need to take a step back, rest and give yourself a break. Give yourself a break from your expectations. Give yourself a break from others’ expectations. Give yourself a break from the work and stress, and take time to figure out where the burnout is coming from – for when you do that, you can finally start to not only deal with these feelings but hopefully once again find joy for the journey you are on.

Matt Sloan

The Sign That I Was Depressed, Lonely, and Bullied in Middle School

On my first day of Middle School, I turned to a group of strangers and said six words no 11-year-old should have to say. I meant them, though, with every single part of me. They were the first real expression of my inner self, my blossoming core that had been battered and bruised and bloodied by repeated emotional strikes that, while leaving no obvious marks, worked me like a blacksmith works a blade. Just six words — innocuous, maybe a little self-pitying, but ultimately a cry for help that didn’t come. I’d already been bullied throughout Elementary School, rarely physical but mostly emotional bullying, ignored and ostracized from my peers. Although I didn’t fully realize it at the time — or perhaps couldn’t look at it because it was too painful for my young mind to acknowledge — I was often lonely. I sleepwalked through life, awash in my inner world, sometimes picturing a familiar by my side as my only companion. It was an imaginary dog, then — a huge, black hound called Shadow, shaggy and fierce and protective. I’d call to him even through my teenage years, picturing him in my mind’s eye until he came running. He was there when nobody else was, and he was a comfort in a way. However, I’m going to dispense with the lyrical for a second because there truly was nothing lyrical about this. I had a few “single-serving friends” that came and went like the common cold, but nobody truly stuck around for long enough. It quickly made me feel “Other,” like there was something fundamentally wrong with me that I couldn’t see but everybody else could see, and sense, and feel after being in my presence for just a little while. And that, dear reader, is a feeling that has stayed with me for the resulting 20-something years. You see, on that first day of Middle School, my loneliness was thrown into sharp relief. In my first class, I sat alone. I think a part of me hoped that now, in a new school, things would be different. But nobody sat beside me, and there, in front of me, sat one of the single-serving friends I knew from Elementary. He acknowledged my presence at the desk behind him and, to the unfamiliar kid seated next to him, said: “Don’t bother with him; he’s weird.” I was loud enough for me to hear. It seeped into me like poison. My new beginning already lay in tatters, and I was naive to think anything would change when some of those same people came with me. The day only got worse from there. At lunchtime, I had nobody — a theme that would continue for many lunchtimes after — so I asked an older boy for directions to the cafeteria. It’s lucky that his friend intervened because he tried sending me to the rugby pitches instead — a long and muddy walk up a gravel road, past a building site. So, they showed me the real way to get there. So far, so good, I guess. I stood in line. I asked for fries. I anxiously handed over my money because even then, anxiety whispered its lies and its secrets to me. And, then, like a bad teen movie… I had nowhere to sit. I had no friends. I recognized nobody. In that moment, I think I would’ve sat even with the single-serving friend who called me “weird” because hey, it’s better than being alone, right? He was nowhere to be seen, though, so I spotted an empty seat at a table otherwise occupied by older girls. I had to do it, I thought. I needed to eat somewhere. I sat down and understandably, perhaps, they looked at me with quizzical eyes. I tried not to make eye contact even while one said, “who are you?” I kept my eyes down, focused on the scattered fries on the plate, and spoke those six innocuous but self-pitying words: “Nobody you would like to know.” They laughed, those girls. One said, “Did you hear what he just said?” The memory becomes blurry after that, but I can feel the humiliation and hear their laughter even now, reaching out over the gulf of those intervening years. Things haven’t changed; not really, at least as far as I can see. When a therapist took me through a thought exercise in which I met my inner child along a country path, she asked me what happened — what I saw, what I felt. “He’s lonely,” I told her. “He feels so alone and he doesn’t know how to trust me.” He doesn’t. I don’t. I don’t know how to trust you, dear reader, because those years of loneliness and isolation have left their indelible scars on the fabric of my soul. I still feel Other . When something happens to trigger those beliefs, as they did just days ago, I see danger in the shadows of every interaction, even with those who would profess to be my friends. There’s something deeply, fundamentally wrong with me, and I can’t quite find what it is. It’s a theme that made its way into my novel, ‘The Shadows at Sunrise,’ in the form of its main character — a teen who, due to supernatural circumstance, is ostracized and hated by everyone he encounters until he finds the one person who doesn’t, and the reality-shattering reason why. But there is no supernatural circumstance for me. Just depression, trauma, and the scars that bullying can leave upon a person. The friendships I have appear to be fleeting. The people who have left are confirmation that my core belief — that “I don’t matter” — is true. The people who are still here — even my loving fiancé, who understands me better than anyone else? It’s only a matter of time for them. That’s what my inner child says, anyway. He’s still hurting. He’s got his guard up because it’s too dangerous to let people in. He’s still sitting alone in that cafeteria while others laugh at him. He’s still walking the halls of the school every lunchtime, feeling eyes upon him even where there are none. He still feels invisible and Other in crowded rooms and in rooms where it’s just him and somebody else who says they know and love him. Even now, he feels like he is nobody you would like to know. If you can relate, I’d love to hear from you in the comments below. You can also follow me on my blog at mattsloanwrites.com, or follow me on Twitter @mattsloanwrites.

Suspended Between Hope and Hopelessness in Life With Chronic Illness

Hope. Sometimes it is the only thing that makes life and the situations we find ourselves in even bearable. Hope is something we all look for, something we all need, and something that is sometimes the most elusive and difficult thing to find. It is the one feeling that many times makes the difference in the pain we are facing, determining how and if we will walk the path laid before us. Let’s be honest, life is hard, and at times, it really sucks. There are days that the pain, loss, and struggle seem never-ending. You find yourself in a dark pit with no way out. You see only sorrow in your future, and you feel there is no way forward that is not hard and painful, and the end you see does not look pretty. On these days your hope seems lost. Let’s be honest, life is good, and at times, it really is amazing. There are days that in spite of the pain, you see your blessings, you see promises of something good, and even though you are in a pit right now, you see bright possibilities of the future. You see a path forward, painful though it may be, that is full of possibilities, and on these days, your heart is full of hope. In life, we have often heard that there are two groups of people out there: those who see hope and those who do not. You know, the glass half full and half empty groups, sometimes referred to as the Optimists and Pessimists. Do you see yourself in one of these groups? Do you see yourself in either? Believe it or not, I am not speaking about two different people, but of the same person – me. There are days that I live in one place or another, and days in which I float between both of these worlds, feeling each deeply. Sometimes, I find myself in both of these worlds simultaneously as my mind is in one and my heart is in the other. Have you ever found yourself in such a place – suspended somewhere between hope and hopelessness – feeling and knowing both in the same breath? There are days I feel of two minds and two hearts, holding to hope, yet feeling hopeless. To many, this might sound odd. How can you feel and be in both places at the same time? To be honest, I am not sure how, and until I experienced this, I would not have believed it, yet many days in my battle with chronic illness (for me it is rheumatoid arthritis and young-onset Parkinson’s disease), this is exactly where I find myself. My heart and mind seem to be at war, as I feel and cling to hope, yet feel the doubt, uncertainty, and despair of hopelessness. It seems to be a constant war in me as I and my family walk a very challenging and unique path. These opposite and conflicting emotions, when occurring simultaneously, can be very frustrating, and feel very unsettling. As I am suspended between the two, floating from one emotion to the next, sometimes within seconds and minutes of one another, it is sometimes hard to process, accept, and even figure out how to move forward. Sometimes, I even beat myself up for feeling hopeless when I am so blessed. Sometimes, I beat myself up for being overly positive when walking a hard path. In the process of these conflicting thoughts, I only make myself feel worse and make my struggle that much more difficult. If you haven’t realized by now, the mental and emotional battles of chronic illness or loss are sometimes the hardest fought battles of all, for it is these battles that I fight within myself and against myself. They are often the fights that I do not let anyone else see. They are the secret battles that can take a greater toll on me and my health than the physical ones. It has taken me over 30 years of chronic illness to admit this battle, not just to others, but to myself, and it has taken me just as long to feel OK, and to give myself the grace to feel hopeful, hopeless, and both together. I am learning that both emotions and both places are OK, and in some ways needed for this journey I am on. The times of hopelessness remind me of how hard and challenging these conditions can be for a young man and family. The times of hope remind me of all I have to be thankful for, and that no matter what I think, my future is not written yet. The times when I feel both remind me more than any other that no matter what I feel, I choose how I will move forward. Today is one of those days when I am living suspended between hope and hopelessness, and that is OK. For the path I walk is very hard and painful today, yet I have many blessings, and I know not what tomorrow holds. While I live in the pain and despair of how I feel today, I also live in the blessings I have, and the hope for tomorrow. If like me, today you are living in both of these places, give yourself the grace and acceptance you need. Don’t beat yourself up for feeling this way. This path we find ourselves on is challenging and unlike any other challenge faced by another. Each day, we just must walk forward the best way we can, accept it, and find peace for where we are, because sometimes in our loss and pain, we all live suspended between hope and hopelessness.