“How strange: to land in the second part of your life, without even having lived its first.” – Trivarna Hariharan
Life is weird. Everything is so weird all the time. I think about how weird my life is every time my dad helps me in and out of my wheelchair at the doctor’s office, and when he helps me transfer from my wheelchair into the car. I always think about how weird this all is because it shouldn’t be like this. I used to be a horseback rider. I used to rock climb and ride my bike and swim in the ocean. And when I was well enough to, I would drive around in my car and blast music when life felt weird. I don’t get to do that anymore. I can’t tap out, or get a break, or step out of my skin. There’s no relief from the pain, no respite for a tired body. There’s pain, exhaustion, more pain, agony, grief, disbelief, depletion. And then there’s still “regular” life that you have to deal with on top of all that. I think there’s this false belief that once you get sick, your illness becomes your only problem, but it doesn’t. You don’t acquire immunity to regular life issues once you get sick or become disabled. I still worry about the same things other people do – family, your relationships with people, how to cope with stress, money – albeit, through a different lens and with more intensity and fear than I used to, but when you’re this ill, everything in your life feels fragile. Everything feels breakable.
Today is a weird day for me. 15 years ago on this day, I had spinal surgery, and 15 years ago on this day, that surgery triggered what would be the rest of my life. A lot of things went wrong during my procedure – I started the surgery in one hospital and woke up in the ICU of another, still intubated, awake – and I was left with permanent back pain and chronic nerve pain down my left thigh, a thigh I never regained full feeling in. But that’s how life goes. Sometimes you’re the person that things happen to and sometimes you’re the person people look at and think, “thank God that’s not me.” I’ve tried to put it behind me, but no matter how many years pass, it’s never quite far from me. And the way I feel about life is that a lot of life is learning to live with what’s happened to you. And the pain that that surgery put me through and has kept me in – I learned to live with it, and I do. I made my peace with it a long time ago. It’s everything else that happened after that, that I struggle with. The autoimmune diseases, the chronic illnesses, the endless co-morbidities and symptoms that only multiply, like something out of a horror franchise. All the agony that those things put me through. Family and friends not knowing what to say, doctors using phrases like, “what we can offer at this point in your disease is symptom management” (I wish that were actually a thing) or “all we can do for you right now is life management,” treatments not working, treatments making me sick and leaving me collapsed on the bathroom floor for hours, treatments not being covered by insurance.
Life will never make sense to me again. I have one certainty in that at least. I live with loss everyday. I’m unfamiliar with the absence of grief. I’m limited and I am utterly human against my illnesses and it leaves me feeling significantly mortal, and at times, less of a person. Long gone are the days of being told I could do anything I want, be anything I want, overcome anything that came my way. Life happened one day and it’s kept happening ever since.
The Elephant in the Room 
Thank you so much for sharing! You’re able to reveal your heart so well.
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Thank you so much for reading ❤️
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This is so moving. Some universal truths in there that you’ve nailed so well.
Just a stranger, but rooting for you.
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Thank you for taking the time to read it. I appreciate what you said so much.
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Thank you so much for sharing!
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Thank you for reading it!
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My heart goes out to you my friend. Thank you so much for sharing your pain, sorrow, heart, and soul with the world. I am forever rooting for you
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Thank you for taking the time to read it – I’m so moved by what you said. Thank you 🤍
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Thank you so much for sharing your struggle, and your courage, in such an articulate way. I will pass this blog on to my daughter who is fighting so hard to come to terms with living life with a set of chronic illnesses. She is currently much less severe than you are, and so is still able to work at the moment, see friends and so so on, but as her mother (also chronically ill) there is this fear with me that she is working herself into a crash. Yet I applaud her courage and determination as I do yours. With sympathy and admiration and prayers from the UK.
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Thank you so much for reading my blog & sharing it – I hope it can offer both you & your daughter some solidarity. She’s not alone 🤍I’m sorry to hear all that you are both struggling with. It is so insanely difficult to live with chronic illness & my heart goes out to her.
Thank you again for reading & for your kind words. Sending solidarity to both of you, and I hope you both have some easier days ahead 🫂💙
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You are such an insightful, talented, and expressive writer. Thank you for sharing your story. My heart is with you. Always.
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Thank you for taking the time to read it! And thank you so much for your kind words – I appreciate it so much ❤️
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Thanks for sharing the truth. Most people live a life far from the truth, far from the essence of existence. You know the truth and you have a talent to express it. I hope, like you, that one day the truth will change (yes, sometimes what’s true and false change) and that reality will be a more fair place. My best wishes for you and your loved ones.
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Thank you for reading it! I have hope for the future as well – that’s all we can do some days, is hope for a better future. Thank you again for your kind words 🤍
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Sending you solidarity from a fellow chronic illness sufferer in the UK. I dearly wish you improvements with your health ❤️ Please carry on writing when you are able to as you do so in such a powerful way 🙏
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Thank you so much ❤️ And thank you for taking the time to read it. I’m so sorry to hear you suffer from chronic illness too – I sincerely hope you have some better days ahead. Sending my solidarity to you as well. 🫂
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So true 😥
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I love you M – I keep up with your blog and think about you every day. Your writing is so insightful, powerful, moving, and honest. I admire you endlessly. I’m always sending you my love ❤️Lilly
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I love you!! You always move me, with your writing, your friendship, your support. Thank you for your message – you made my entire day. Love you ❤️
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