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For most of my adult life—with the exception of 16 years of marriage—I was fiercely independent, both financially and emotionally.
I took care of myself. I solved my own problems. I made my own decisions. And if something needed to be done, my first instinct certainly wasn’t, who can I ask for help? It was, move over. I’ve got this! Then one day, I started having issues with my memory, tremors in my right hand, double vision, and my limbs felt stiff as a board. I also felt clumsier than usual, off balance, and started dropping things daily. Apparently, my body had decided that after decades of being a control freak, it was time for an intervention. Fast-forward to last month. I just turned 67 years old, diagnosed with Parkinson's eight years ago, and trying to live my life without changing a thing. And despite my best efforts to ignore my diagnosis, I had to admit, I was not the same "able-body" I had once depended on without question. It was time to face reality and say goodbye to my old life and old ways of doing things. That was a tough pill to swallow (I know because I take 13 pills a day) and one that I am still trying to navigate. So, I am working hard on making necessary adjustments that will keep me as safe as possible while still enjoying my life. Recently, someone asked whether it was harder dealing with my memory issues or my physical symptoms. Honestly, both suck because they affect my ability to remain independent and in control over my life. It's my own personal version of hell. However, I am starting to see some positive things that have come from having this disease, such as handicap parking, getting a seat on a crowded bus, and enjoying a nap or two throughout the day without guilt. Not too mention, if I am invited to an event that I don't want to attend, I can simply say I'm too tired or I can't find someone to take me. I still have really good days when I almost feel like my old self. But strangely, those days can make accepting my Parkinson's even harder. It’s like having an uninvited passenger sitting quietly in the back seat. On those good days, I can almost forget they’re there. I start to relax, make plans, and feel like I’m back in control. Then, without warning, they lean forward and remind me they’re still along for the ride. These days, I spend less time driving myself and more time being a passenger. It's safer for me and for the other drivers on the road. I know one day, I'll have to give up driving completely, but for now, I'm learning it's okay to let someone else take the wheel when I'm tired or need to conserve my energy for the rest of the day. For me, that is what makes Parkinson’s so difficult to accept. It’s not just about the tremors, stiffness, fatigue, or balance problems. It’s about recognizing that I can’t always rely on my body—or my brain—to do things the way I’ve always done them. Parkinson’s doesn’t always announce itself. Sometimes it quietly hangs out in the background while I go about my day, letting me believe for a little while that I’m still the person I used to be. And then, inevitably, it reminds me that while I may still be me, I'm just a slightly different version (at least that's what my friends say). As difficult as it is, I am realizing that for my own sanity—and for the people around me—I need to listen to what my brain and body are telling me. I have a neurodegenerative disorder, and I need to adjust my thinking, my habits, as well as my lifestyle. Not because I’m giving up, but because I’m learning to work with the body I have today instead of constantly fighting the one I used to have. One of the hardest and best lessons I have learned so far is that acceptance does not mean giving up.
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We all have struggles, whether we are Black, Caucasian, Hispanic, Muslim, Christian, Jewish, gay, straight, rich, poor—or somewhere in between. Struggle doesn’t discriminate.
We can let our circumstances define us and our choices, or we can use them to inspire us to change and grow. This is true at any age. Whether you are able-bodied or disabled, old or young, there are almost always choices we can make to enhance our lives. It’s not easy. And sometimes the obstacles we face are very real and very unfair. But I can show you thousands of people, both public and private, who have faced unimaginable challenges and pain and, through a combination of inner strength, resilience, determination, support and mindset, have gone on to live meaningful and fulfilling lives. Consider Michael J. Fox, who was diagnosed with Parkinson’s disease at only 29. Rather than allowing the diagnosis to end his story, he eventually made it public and founded the Michael J. Fox Foundation to accelerate Parkinson’s research. Christopher Reeve was one of the most recognizable actors in the world when a horseback-riding accident left him paralyzed. He became an outspoken advocate for people living with paralysis and for spinal-cord research. His work continues through the Christopher & Dana Reeve Foundation. Bethany Hamilton lost her left arm in a shark attack at 13 and returned to competitive surfing. Malala Yousafzai survived being shot for advocating for girls’ education and continued speaking out rather than allowing violence to silence her. And then there are millions of people whose names we will never know. The single mother working two jobs while going back to school. The 70-year-old who decides it isn’t too late to fall in love, learn something new or begin an entirely different chapter. The person recovering from addiction who wakes up every morning and chooses sobriety one more time. The person living with a progressive disease who adapts to what their body can do today instead of spending every day mourning what it could do yesterday. The survivor of trauma who finally finds their voice. They may never make the news, write a book or receive an award. But they are every bit as courageous. How Did They Do It? There isn’t one magic formula. Resilience doesn’t mean you never fall apart. It doesn’t mean you don’t cry, get angry, feel frightened or occasionally wonder, Why me? It means those feelings don’t get the final word. People who move forward often learn something important: Accepting reality and surrendering to it are two very different things. Acceptance says, this is where I am. Surrender says, this is where I will always be. Sometimes fighting back means doing something enormous. More often, it means doing something very small. Make the phone call. Ask for help. Go to therapy. Take the class. Apply for the job. Join the support group. Move your body for ten minutes. Leave the relationship that is destroying your sense of self. Forgive yourself for a mistake you made twenty years ago. Try again. And sometimes, simply getting out of bed and facing another day is fighting back. You Don’t Have to Do It Alone There’s another important lesson hidden inside many stories of resilience: strong people ask for help. We romanticize the idea of the person who overcomes adversity entirely through grit and determination. In reality, resilience is often strengthened by other people—friends, family members, therapists, doctors, teachers, mentors, support groups and even strangers who show up at exactly the right moment. Asking for help isn’t surrendering your independence. Sometimes it’s the decision that allows you to reclaim it. If you don’t know where to begin, these national resources may help: NAMI (National Alliance on Mental Illness) — Offers mental-health information, education and support. NAMI.org SAMHSA / FindTreatment.gov — Helps people locate mental-health and substance-use treatment services throughout the United States. Disability Information and Access Locator (DIAL) — Connects people with disabilities to organizations and resources that support independent living. DIAL.ACL.gov Christopher & Dana Reeve Foundation — Provides information, peer support and resources for people living with paralysis and mobility challenges. ChristopherReeve.org 988 Suicide & Crisis Lifeline — If you or someone you know is experiencing emotional distress or a mental-health crisis, call or text 988 to connect with a trained crisis counselor. Your circumstances are part of your story—not the ending. I don’t believe every painful experience happens for a reason. Some things are simply painful, unfair and beyond our control. But I do believe we get to decide what we do with much of what happens to us. You may not be able to change your diagnosis. You can’t change the family you were born into. You can’t undo trauma. You can’t make someone love you. You can’t turn back the clock. And you certainly can’t control everything life is going to throw at you tomorrow. But you still have choices. You can ask for help. You can learn. You can adapt. You can create. You can connect. You can forgive. You can speak up. You can begin again. And perhaps most importantly, you can refuse to believe that the hardest thing that ever happened to you gets to determine everything that happens next. Sometimes our greatest strength isn’t discovered when life is going according to plan. It’s discovered when the plan falls apart. So if you’re facing something today that feels bigger than you are, don’t worry about conquering the entire mountain. Just find the next foothold. Then the next. Your circumstances may change the path you take. But they don’t have to decide where your story ends. Some days, I feel like there are two brains living inside my head and neither one got the memo that they’re supposed to be on the same team.
There’s my ADHD brain, which has been with me for most of my life. It loves ideas, distractions, spontaneity, and doing three things at once. It sees absolutely no reason why I shouldn’t carry a cup of coffee, answer a text, think about what I want for dinner, and walk across the room—all at the same time. Then there’s what I sometimes think of as my Parkinson’s brain. It has a very different message: “Candace, could we please just concentrate on walking?” Lately, the two seem to be playing tug-of-war in my head, and it’s no picnic. My brain still wants to multitask while my body sometimes struggles to put one foot in front of the other. For most of my life, juggling a half-dozen or more things felt completely normal. In fact, I considered it one of my superpowers. Like many people with ADHD, my brain can jump rapidly from one thought or task to another. Something catches my attention, which reminds me of something else, which makes me realize I forgot to do something in another room. And off I go. The problem is that Parkinson’s has changed the rules. At this stage of my Parkinson’s, many everyday physical activities require much more concentration than they once did. Things I used to do automatically—walking, turning, navigating around furniture, carrying something from one room to another—now require me to pay much closer attention to what my body is doing. That becomes a problem when my ADHD brain decides to take a field trip. I might start walking toward the kitchen, notice something on the table that needs to be put away, remember an email I forgot to answer, and suddenly my brain is three steps ahead of my body. If I turn around too quickly, I can lose my balance. My ADHD brain says: “Oh! One more thing!” My Parkinson’s brain says: “Whoa! Could we please finish what we’re doing first?” Unfortunately, my body sometimes gets caught in the crossfire. There’s actually some science behind this. Parkinson’s disease affects dopamine-producing neurons in a part of the brain called the substantia nigra. Dopamine plays an important role in the brain circuits that help regulate and coordinate movement. As dopamine-producing neurons are lost, movements that once happened automatically can become slower and require more conscious effort. Parkinson’s can also affect cognitive functions such as attention, planning, and the ability to shift between tasks. ADHD, meanwhile, involves brain networks responsible for attention, impulse control, organization, and executive functioning. That can make it harder to resist distractions, stay focused on one task, or stop one thought from triggering another. The two conditions are not the same, and they don't simply have the same neurological cause. But for me, the combination creates an interesting—and sometimes frustrating—conversation between my brain and body. My ADHD brain wants to move on. My Parkinson’s body sometimes needs me to slow down. And apparently, I’m the referee. This is especially frustrating because, for most of my life, my ability to juggle multiple tasks was a key to my success. I was a journalist, entrepreneur, writer, business owner, and communications professional. Moving quickly, shifting between tasks, and thinking about several things at once wasn’t just how I worked—it was part of my identity. But Parkinson’s is teaching me that there is a difference between what my brain wants to do and what my body can safely do. And honestly, that has been a difficult adjustment. My first instinct is still to move fast, squeeze one more thing into the moment, and think, “What can I do next?” Now, if I don’t quiet my ADHD brain, I risk tripping, losing my balance, bumping into something, or falling. So I’m trying something I probably should have learned decades ago: Just because I can think about five things at once doesn’t mean I should try to do five things at once. I wish I could tell you I have mastered this trick—balancing it all like a magician pulling a rabbit out of a hat. I haven’t. On my good Parkinson’s days, I feel energetic and capable—until my old ADHD brain wants to start a fight. Seriously, it’s exhausting. So now I am practicing: Stop. Focus. Finish. Move on. That may sound incredibly simple if only my ADHD brain came with an on-off switch. Maybe slowing down is the lesson. Learning to live with Parkinson’s in my sixties has been challenging, both physically and mentally. But I’m grateful for the lessons it is teaching me. What once motivated me to get up each day has changed. My ADHD brain can still dream, create, explore, and come up with a dozen ideas before breakfast. That part of me is still very much alive. I just don’t have to act on every idea that comes to mind. Parkinson’s has also taught me that a meaningful life isn’t measured only by how much we accomplish or how quickly we move. It’s about accepting our past, living in the present, and being grateful for what we can do. It means making time for the people and things that matter most. Michael J. Fox, who has lived publicly with Parkinson’s for decades, once said: “Ninety-nine percent of the rest of my life is not Parkinson’s, it’s other stuff.” I love that. Because Parkinson’s is part of my life, but it isn’t my whole life. Slowing down isn’t the enemy I once thought it was. It may actually be exactly what I needed at this stage of my life. And honestly, I couldn’t be happier. Though, my ADHD brain might have a few things to say about that. |
Photos from cambodia4kidsorg, wuestenigel, Ben Taylor55
