Today, I had a conversation with myself, as my grandma used to say. It’s been a beautiful, hot day, but I only was able to enjoy about an hour of it. You see, last night, the pain was so bad, I couldn’t sleep. Pain meds didn’t help. The gut pain only reduced if I stood up and walked around, and I have a limited ability to do that. Standing hurts. Pacing hurts. Not doing either hurts worse when the pain of the radiation damage to my GI system acts up. For hours last night, I stood and paced, and stood some more, until I finally fell over, so exhausted that around 4am, I was able to sleep for a few hours before it was time to get up.
No matter what, I get up between 6:30-7am each morning, and go for a bike ride/walk with a neighbor from 7:30-8:30am. If we don’t go then, it is too hot to do it later. There are times when my gut is hurting too much for me to make it the whole 2 ½ miles, but most days, I am able to push through, enjoy the sunshine, and a long chat with my neighbor about just about anything. I feel so happy when I’m out and about on my three-wheeled bike. I’m not able to walk much these days, but when I’m on that bike, I can move freely through the world.
By the time we get home, and I eat a small breakfast, the lack of sleep from the previous night, and the overwhelming fatigue I always seem to be battling, takes over. By 10:30am, I’m sound asleep again. Today, I didn’t wake up until 5:30pm! And yes, I’ll still be tired at bedtime.
Some people might think, well, you should just “push through” and not let yourself rest. The problem is that my body overrules that.
The fatigue will cause me to fall asleep sitting bolt upright when I try to push through. It will cause such exhaustion, that I start tripping over my feet, and a fall is not something I can afford to risk. My brain will become cloudy, and while I may fight it off for a few hours, I get nothing done during the time I’m “pushing through” and I’m still just as exhausted.
It is a hazy, confusion-filled time when 100 percent of my mind is focused on three words: don’t fall sleep. The battle doesn’t allow me to get anything done. It doesn’t allow me to enjoy anything or take care of any issues that demand attention. It is just a battle, that always ends the same way. Only a fool fights the same losing battle, day after day. I may be many things, but a fool is not one of them.
Please realize, I’m not experiencing sadness, pessimism, or a failure to “stay positive” because of a lack of trying. My life does sometimes feel hopeless because I’ve been living under an extraordinary and nearly continuous burden for a very long time. But I do find moments to find joy in small places. It occurs to me that most people experience major medical crises as isolated events, while I’ve experienced them as a way of life.
I was born with significant orthopedic problems that required repeated surgeries in early childhood. Before I had the opportunity to develop the same sense of safety and independence that most children take for granted, my body had already taught me that pain, limitations, and uncertainty were part of everyday life. I also learned that people expected me to be cheerful, happy, generous, and helpful without showing one iota of the pain or distress I was experiencing.
That taught me that making others more comfortable was more important than acknowledging what I was going through. It taught me that showing pain was a failure on my part and that I was only acceptable as a person when I was hiding my own reality and living up to other people’s expectation that I should be courageous, giving, and inspirational. Being inspirational is a hard mask to wear.
The human brain is designed to cope with hardship when there is a reasonable expectation that the hardship will eventually end. That’s why most of us can deal with extraordinary problems for a period of time, always with the hope and knowledge that at some point in the future, that burden will end, and something better awaits.
But for me, instead of that chapter ending, new chapters kept being added: autoimmune diseases, cancer, radiation injuries, bowel loss, chronic dehydration, neuropathy, kidney disease, chronic pain, fatigue, mobility limitations, and the constant threat that another medical complication could arise at any time.
I have repeatedly climbed out of one crisis, only to find another one waiting. That creates a profound sense of instability. It makes it difficult to trust my own body, difficult to make plans, and difficult to believe that effort will ever lead to better times ahead.
There’s another piece I sometimes think about: loss. Not only the obvious losses, such as health and physical ability, but the loss of ordinary life experiences that most people never even think about. I’ve had three careers cut short because of progressing physical limitations. I’ve found friendships have always been difficult to make and even harder to maintain. Simple travel, even locally, requires more energy than I have, and so many social events have become inaccessible to me. The simple ability to wake up and decide to do something without first calculating the physical cost is something I lost a long time ago. And perhaps the hardest part is that I’ve had to carry much of this alone.
I’ve spent years learning to hide pain, minimize my needs, and keep moving forward despite everything. That strategy helped me survive many situations in my life, but surviving and feeling supported are not the same thing. When someone struggles this hard for this long without a reliable safety net, it’s understandable that there are moments when the future feels less like an opportunity and more like another series of obstacles to overcome.
Despite feeling hopeless at times, I’ve never actually stopped investing in life. I am still pursuing medical care. I still research my conditions and seek out expert advice. I still write. I still advocate for people with disabilities and for improved accessibility. I still look for beauty, humor, friendship, and meaning. I still try to make plans for improving my quality of life, even after countless disappointments.
Please don’t think that means I secretly feel hopeful all the time. It means that the part of me that wants to live a meaningful life has never disappeared, even when the part of me that is exhausted continues to speak so loudly.
Even though my life feels hopeless sometimes, I don’t think that is because I’m weak, ungrateful, or failing to cope. I think it is because I’ve been asked to carry a burden that would overwhelm many people, and because the life I’ve had to build requires an extraordinary amount of effort just to maintain what others consider ordinary. Given everything I’ve survived and everything I’ll more than likely continue to face, I think the more surprising fact is not that I sometimes feel hopeless but that I’ve managed to preserve as much hope, curiosity, compassion, and determination as I have.
I’d be lying if I said that the burden wasn’t too much, sometimes. I wish I had someone to share my life, to be on my team, to help when things are difficult, and to enjoy things together. I spent most of my life being a safety net for others, yet I’ve found I have a complete inability to develop a safety net for myself, beyond a few people who help when they can. I’m very friendly, and great at meeting people, but dreadful at actually developing friendships. I might do better if I had more practice, but when your body barely as the energy to leave the house, it does make things difficult.
I miss the simple things: conversation, doing errands together, watching a show or playing a card game, fixing a meal together and then enjoying it. I miss sharing confidences, discussing our opinions, planning an adventure, working as a team to get things done, and seeing new sights.
I have so much gratitude for all I have: a comfortable home, a beautiful scene out my window, a little dog who thinks I’m the center of the universe. But I’m also quite aware of the things one can do without for a short while facing a crisis, but that are quite necessary to feel fulfilled in life: someone to share time with, a social circle, seeing new places, visiting familiar ones, trying new things, mixing with others, and most of all, making a contribution to life and society.
I don’t have a neat conclusion to offer here, or a lesson to tie all of this together. Some days, my life feels unbearably small, constrained by circumstances I never chose and cannot simply overcome that through effort or determination. Other days, I can still find moments of beauty, purpose, humor, and connection that remind me why I keep going.
Perhaps that is what living with chronic illness, disability, and loss really is: learning to hold two contradictory truths at the same time. I can be profoundly grateful for what I have and deeply mournful for what I have lost. I can appreciate the life I have built while still longing for the life I thought I would have. I can continue moving forward while also admitting that the journey is often lonely, exhausting, and tremendously unfair.
I don’t think that makes me ungrateful, weak, or hopeless. I think it simply makes me human. I wish for more companionship and less hardship. I wish for more stability in my life and fewer chaotic crises. And when I wrap all of that together, my thoughts become jumbled somewhere between gratitude for all that I have, desperation for all that I need, and an emptiness for all that I still want. Somehow, all of those feelings can exist together, and I feel certain that accepting those contradictions is part of what it means to be human.
The Small, Hesitant Moments – Jan Mariet’s A Day in the Life
