A Journey Through Loss, Resilience, and Joy

Cross
Verily, lift up thine eyes unto the heavens, and behold: I walk with thee.—- BUT are you though, i can’t feel it.

There have been many moments when I’ve felt like one of God’s forsaken children. Lately, the distance between us feels like that of a 47-year-old son living 350 miles away from his dad—close enough for a human connection, yet we only communicate by phone, and half the time, nobody picks up.

Feeling Disconnected

I have an unconventional way of looking at life. I don’t expect everyone to understand, but perhaps the reason I feel lost and stuck is that I haven’t yet leveled up my avatar. This isn’t a moment of questioning faith or sulking because things aren’t going as expected this is my quest for patience, love, discovery, understanding, and inspiration. As if I need anyone to hand me the things that will make my life more manageable. (You can ask my wife; she’ll testify to how often I insist I don’t need anyone to do things for me.) I honestly HATE asking for help.

Searching for Happiness

Which way is Happy Town

While I said I don’t feel alone, I do feel isolated in my search for happiness. Maybe my idea of happiness and joy is too cliché or too specific. Yet, this seems paradoxical because I invite and find joy in many things—my gratitude practically radiates from my face. Instead of begging or praying, I now approach life differently. I have given up the illusion of a fixed “me,” hoping that my higher self will lean in and bring more peace and happiness. I believe it will be easier to let go and watch life unfold.

I cannot stress, wish for, or demand a savior to rescue me from my wheelchair. Then again, I’m not one for surprises—but it’s been so long since I’ve been impressed that I’d welcome a positive shake-up. Please send me a rescue team; today is my day. I remind myself daily that the more gratitude I show, the further my needs seem to run away. It’s almost as if God themself is telling me to wait. After all, there are others who need to eat, who are starving and sick there are literally fires to put out and people in power who need to be checked. But aside from all that, I believe I deserve a conversation to guide me, and I’ll take it from there.

On Anxiety, Identity, and the Realities of MS

Waiting for my Ride in the cold.

Before anything is misconstrued, I don’t want anyone reading this to think I suffer from a mental disorder. If anything, I might greet you with anxiety and then introduce you to a bit of winter blue depression. Listen, if you live in a big city and don’t show some signs of anxiety, then are you even real? You might as well be an NPC at least here in New York, where we grumble about bacon, egg, and cheese prices and congestion fees.

Back to my disoriented self: yes, I am confused by this reality. On one hand, I’m fighting for my spiritual freedom; on the other, I’m battling physical limitations. I’ve been a hostage to this disease (Multiple Sclerosis) for some time now, and I must deal with its impact on every part of me. I won’t lie it weighs heavily on me because I have lost so much. There are no days off for me, not even on weekends. The biggest stressors are my living situation, my work, and other daily annoyances that hinder an optimal life.

The losses I have experienced because of MS are real, deeply personal, and sometimes impossible to articulate. The losses in certain physical abilities have not been fully mourned. It’s hard to stomach the fact that I sometimes lose my sense of independence. This disease has affected my career and the effortless daily life I once knew. These losses aren’t just about mobility or energy they touch on my identity, my relationships, and the way I move through the world.

Transformation Through Adversity

It may just be my day.

Yet, I also know that loss doesn’t define me. I hope that through everything I’ve shared, you can see how I’ve found humor, leaned on love, and moved forward despite the hand I’ve been dealt. To say I lost a part of me would be a lie; instead, I have transformed. I hope that through my writing you can witness my resilience and my ability to connect and reflect on what Multiple Sclerosis has taken.

I am literally crying as I type these final words. I want to say that I am still here, still thinking, and still spreading love the “Brooklyn Way.” I knew this disease wasn’t going to be easy. There are moments when the weight of it feels unfair and exhausting. But I also believe that in the spaces left by what’s been taken, I’ve made room for something else, perspective, wisdom, and a sharpened sense of what truly matters. And that… that’s something MS can’t touch.

I love you, and I hope you love me too.

Comments

2 responses to “A Journey Through Loss, Resilience, and Joy”

  1. Gavroche Gelin Avatar

    You embody the Brooklyn Way of sharing love my brother. Thank you for the insight on your journey and sharing the gems you’ve found along the way.

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  2. Rosa Lozano Avatar
    Rosa Lozano

    Jon I know you probably hear this a lot but you got this. You are surrounded by love, support and people who care. Remember you have MS but MS doesn’t have you. Our brain is everything and it follows what you tell it. If you give up the brain will follow just as if you fight the brain will follow. Don’t be consumed by future fear. Thank you for sharing your journey as it is not an easy thing to do and that in itself makes you strong.

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