Monday, November 18, 2024

"The Silent Battle: Unseen Wounds of Multiple Sclerosis"

 The worst effects of Multiple Sclerosis are rarely spoken about, hidden beneath the surface where they can torment the soul. It's not just the loss of mobility or independence—it’s the relentless assault on your identity. The MonSter strips away layers of who you once were, leaving you to struggle with a body that betrays you at every turn. The searing nerve pain, the unpredictable spasms, and the unbearable fatigue—all invisible to the outside world—consume your strength. But the real devastation lies in the isolation, the way it confines you to a prison that no one else can see, The isolation can be physical or mental, or both. You smile through it, but deep down, you mourn the life you once had. These silent battles are the ugliest side of the disease, unseen but deeply felt and grinding at your spirit daily. yet, we endure, fighting to reclaim even a shred of what was lost.

Read the sample/intro from my bo ok "My Story Isn't Over 






Tuesday, August 13, 2024

The Quiet Despair and Resolute Strength of Long-Term Suffering

The Quiet Despair and Resolute Strength of Long-Term Suffering

I am so tired of this forced state of suffering. It’s as if I’ve been assigned a life sentence without the possibility of parole. The physical and mental stress I have lived with all my life sometimes feels like a pressure cooker about to explode. It’s a relentless weight that grows heavier with time, demanding more than I sometimes feel I have to give. And when it feels like I have nothing left, there’s nowhere to go. There is no escape hatch, no back door through which I can slip away. There is nowhere to go when I can’t get up and walk away.

In the past, I could fight back against the physical symptoms. Movement, in all its beauty and grace, was my weapon of choice. There was something powerful in the act of moving—whether it was dancing, walking, or just feeling the rhythm of life flow through my veins. It was the same with social interaction; even the most casual exchanges was so important and at times reminding me that I was not alone in this struggle. But now, these lifelines are slipping from my grasp. The joy of movement has been stolen from me, and the comfort of social interaction has been minimized to the point where it sometimes feels like it’s no longer enough.

On days like today, the gloom can feel all-consuming. It’s a dark cloud that hovers over everything, casting long shadows that are hard to escape. And yet, even in these moments, I recognize that I deserve to feel this way. I deserve to give myself permission to grieve the losses that have accumulated over the years—losses that have chipped away at the person I once was. It angers me. I know I don’t deserve this as my fate, but it is what has stolen so much of my joy too, too often. It’s not about wallowing in self-pity or giving up; it’s about acknowledging the depth of my pain, the weight of my burdens, and allowing myself the grace to simply be.

I know that this feeling won’t last forever. It never does. It is who I fight to remain., everyday and often ffrom moment to moment. The storm clouds will eventually part, and I will find myself standing in the light once again, finding those moments I can fight to enjoy.  It might be tomorrow, or it might be in the next five minutes, but I will laugh, I will joke, I will find my way back to a place of peace. But right now, in this very moment, I am tired. I am so tired of the BS of life, of the constant, unrelenting suffering that has been my companion for forty years. And in this moment, I deserve to sit with these feelings, to let them wash over me, to grieve for the parts of myself that have been lost along the way.

No one, no matter who they are, has the right to judge me for this. Unless they have walked in my shoes, unless they have lived with this kind of pain day in and day out, they cannot possibly understand. And because they cannot understand, they have no right to tell me how I should feel, how I should act, or how I should cope. This is my life, my journey, my suffering. And in this moment, I deserve the space to feel whatever it is I need to feel without fear of judgment or condemnation.

This too shall pass. It always does. But for now, I allow myself this brief moment to grieve, to sit with my pain, and to honor the journey I have been on. Because despite everything, I am still here. I am still fighting. And that, in itself, is a testament to my strength.

When you live with chronic suffering, it’s easy for others to misunderstand your moments of despair. They might see you laugh and joke one minute and struggle to comprehend how quickly the tide can turn the next, and you may be in tears because your level of pain shot up higher. They might question your will to fight, not understanding that these brief moments of joy are the result of an immense internal battle—a battle they cannot see and will never fully understand.

But that’s the thing about long-term suffering. It’s unpredictable, it’s relentless, and it’s deeply personal. It shapes you in ways that are often invisible to the outside world, forging a quiet strength that isn’t always apparent on the surface. This strength isn’t about constantly putting on a brave face or pretending everything is fine. It’s about knowing when to push forward and when to allow yourself to rest, when to engage with the world and when to retreat into your own space.

Long-term suffering should teache you to be gentle with yourself, to recognize that it’s okay to not be okay all the time. It’s okay to have bad days, to feel overwhelmed, to grieve for the life you once had and the person you used to be. These feelings don’t make you weak; they make you human. They are a testament to the depth of your experience, to the determination that has kept you moving forward despite the odds.

But the story doesn’t end there. Despite the immense weight of suffering, there’s an undeniable strength within that refuses to be silenced. I may feel like I’m at the bottom of a deep well, but I refuse to remain there. I refuse to be defined by the darkest moments of my life. Every time I’ve been knocked down, I’ve gotten back up. It may not have been immediate or graceful, but I’ve risen. Each time I rise again, it’s with the resolve that I will keep fighting for my best self, even when the world feels like it’s closing in especially as I continue seeking ways to remain positive and sane.

This tenacity isn’t born out of sheer stubbornness, though there’s a fair share of that, too. It’s born out of a deep-seated belief that I am more than my suffering. Yes, it has shaped me, influenced me, and even tried to define me, but it is not all of me. Within the pain, there is also strength and purpose. Within the struggle, there is also perseverance. Within the despair, there is also hope.

I’ve learned to find light in the smallest of things, to seek joy even in the midst of darkness. It could be a simple moment of connection, a kind word from a friend, or even just the quiet beauty of a sunrise. These moments remind me that there is still good in the world, still something worth fighting for, even when everything seems lost. They remind me that I still myst be determined to remain as whole as I can and must contine to be.

There are days when it’s hard to see beyond the immediate pain, when the weight of the suffering feels overwhelming. On those days, it’s easy to give in to despair, to let the darkness take over. But even on those days, there’s a part of me that clings to the belief that this isn’t the end. That there’s something beyond the pain, something worth striving for. And that belief is what keeps me going, even when everything else seems to be falling apart.

I’ve also learned the importance of self-compassion. It’s easy to be hard on myself, to judge myself harshly for the times when I feel weak, when I can’t seem to push through the pain. But I’ve come to realize that this self-judgment only adds to my suffering. What I need in those moments is not more criticism, but more kindness. I need to remind myself that it’s okay to feel tired, it’s okay to feel overwhelmed, it’s okay to not have all the answers. What matters is that I keep going, even when it’s hard, even when it feels impossible.

And so, I keep fighting. I keep striving to be my best self, even when the road is rough, even when the obstacles seem insurmountable. I refuse to let the darkness win. I refuse to let the suffering define me. Instead, I choose to define myself by how I respond to it. I choose to see my suffering as a challenge, not as a defeat. And in doing so, I reclaim my power, my strength, my sense of self.

Yes, there are days when I feel like giving up, when the fight seems too hard, too long, too exhausting. But on those days, I remind myself of how far I’ve come, of everything I’ve already overcome. I remind myself that I am stronger than I think, that I am more resilient than I know. And that gives me the strength to keep going, to keep fighting, to keep striving for the best version of myself.

Because at the end of the day, that’s what it’s all about. It’s about refusing to let the suffering define me, refusing to let it be the final word in my story. It’s about choosing to see the strength within me, even when it’s hard to see, even when it feels buried under layers of pain. It’s about knowing that I am more than my suffering, that I am capable of so much more than I sometimes believe.

And so, I will keep fighting. I will keep striving. I will keep pushing forward, even when it feels impossible. Because I refuse to let the suffering win. I refuse to remain at the bottom. I will rise, again and again, no matter how many times I fall. I will rise, because that’s who I am. I am an MS Fighter, an MS Survivor, an MS Warrior. And I will not be defeated by this suffering, no matter how relentless it may be.

This too shall pass. It easier to be said than to believe, we we have to find ways around it so it lessens its blows. But in the meantime, I will keep fighting for my best self, I will keep striving for the life I want, and I will keep pushing forward, no matter how hard the road may be. Because that’s who I am. And that’s who I will always be. I just need to, to survive.

And, My Story Isn't Over Ÿet!

Keep fighting warriors!w


By Icerlene Jones-Wiley

Wife, Mother, Grandmother, Blogger, Aspiring Author and Jewelry Designer


I AM MORE THAN MS!