When Exhaustion Changes What Matters: It Became More Than Nails

There are things this disease slowly takes from you that no one else even notices. Not the dramatic things people can easily see, but the quiet pieces of yourself that slowly begin slipping away while you are fighting to hold on to something bigger. 

Sometimes it is not even about giving something up completely. Sometimes it is about becoming less attached to the things that once brought you joy because you simply do not have the same energy for them anymore.

Multiple Sclerosis was not the catalyst for my decision. It was not some sudden moment where I decided to stop caring about certain things. It happened gradually as this disease affected my life more and more and began taking a little more from me over time. Sometimes it is the things you made or did yourself you may become less attached to because, after Multiple Sclerosis stole so much of your energy or even ones mobility, they just did not feel as important anymore.

The only thing that really comes to my mind was something I truly loved doing for myself.

When I was in my early twenties, I started doing something not many people I knew were doing yet. I began doing my own nails. Back then, almost fifty years ago, nail salons were nothing like they are now. 

They were not on seemingly on every other corner like we see now in many places. But I was deeply into fashion then. I designed outfits for a few shows I modeled in, and sometimes I designed my own outfits for the shows or wore the clothes they furnished. It was a beautiful and fun few years of my life.

That was when I started doing my own nails. They were not as fancy as the professionals do them today, but honestly, the only way anyone usually knew they were not professionally done was if I had one of those nail malfunctions, like one popping off unexpectedly. But I am telling you, I did my nails faithfully for over twenty years straight. Through pregnancy, through working in a high-volume mail facility, through exhaustion and life itself, I stayed into it.

I remember sitting outside church on a Sunday morning or two putting on my fingernails. I was serious about that look for myself. It was part of my beauty routine, part of my self-care, part of how I expressed myself as a woman, i guess. Never in my life did I have naturally long, strong nails no matter what I tried. When they grew even a little, they would break. But I loved my bought nails. I always kept glue, fingernails, and nail polish nearby. The size and style I wore were practically customized in my mind because I knew exactly what worked for my hands.

It worked out well though, when one cracked, broke, or flew off somewhere, I was prepared. That was just part of my ritual. I did it for twenty years.

Then somewhere around those difficult days before I lost my mobility nearly twenty years ago, it slowly became less and less important to me. Not because I was depressed. Not because I stopped loving beautiful things. I was simply too tired mentally and physically to care about that part of myself the same way anymore. I was fighting harder battles by then. Fighting to keep my independence became more important than obsessing over my nails.

And when you are in the middle of trying to hold on to your mobility, your strength, your dignity, and pieces of your independence, certain vanities quietly move further and further down the list without you even realizing it.

Lately, though, I have been thinking about it more. I think in the last eight or ten years, I may have only truly taken the time to beautify my hands maybe four times for.

Recently, I noticed my neighbor’s nails with that beautiful chrome polish they wear now, and I thought they looked absolutely gorgeous. I felt the same way when I saw my sister-in-law’s nails over a year ago. Something about it stirred a memory in me. Not just about nails, but about me. About the woman who once enjoyed those little rituals for herself.

Maybe that is another lesson this disease teaches you. Sometimes reclaiming pieces of yourself does not always have to be something huge or life-changing. Sometimes it can be as simple as remembering something you once loved and allowing yourself to enjoy it again without guilt.

So I think before this year is over, but definitely for my birthday, I am going to do what I used to do again. I am going to take the time to beautify my hands. I just will not obsess over them the way I did many years ago.

But maybe, just maybe, it will feel good reconnecting with that small beautiful piece of myself again. I will be going to a salon this time, I just wouldn't be bothered doing this myself or learning a new technique to make them last longer.

Sometimes it is the things you made happen yourself, you become less attached to because, after Multiple Sclerosis steals so much of your lifes energy, those things just do not feel as important anymore.

Icerlene Jones-Wiley is an ordained minister, author and handcrafted jewelry designer who writes honestly about faith, life, beauty, and living with Multiple Sclerosis.

I Wear an "S" on My Chest in Spite of MS

                          

Living within a body that has betrayed you for six decades is a conflict and crisis that brews within—a turmoil seldom acknowledged in the medical community. This internal warfare between the spiritual being I am and the non-stop suffering endured is a harsh reality. In over 30 years since my diagnosis, only one doctor has ever asked, “How are you doing phychologically?” Most of the time, I function at a forced level, verbalizing that I’m fine, even though I’m perpetuating a conflicting message, lying about the reality I live through daily.

This lived crisis is often fought within the confines of my own spirit. I am blessed that my prayers help tamp down the constant suffering this disease causes. My spiritual life has been a saving grace, but the fight for a better self never ceases. My faith energizes my spirit and supersedes the relentless suffering. Yet, make no mistake, living with a chronic illness like Multiple Sclerosis, especially for so many decades, grants one the right to wear an emblazoned, neon “S” on their chest and declare themselves Superwoman. I am all that and more, proving it every day. Still, I am only human, and I am woman, hear me roar!

Multiple Sclerosis is a relentless adversary. It strips away independence and mobility, leaving one to grapple with a sense of betrayal by their own body. For over six decades, I have endured this silent warfare, a conflict that remains largely overlooked by the medical community. The physical pain and limitations are evident, but the emotional and spiritual battles are rarely acknowledged.

When I was diagnosed over 30 years ago, I never imagined the profound impact it would have on every aspect of my life and it would be so extreme. The medical appointments, treatments, and therapies, etc, became a routine, but the human element—the simple act of asking, “How are you doing?”—was often missing. Only one doctor ever posed that question to me, and it highlighted a glaring gap in the approach to chronic illness care. 

Living with MS means constantly functioning at a forced level to keep fightingfor but needi g to redefine "normal". I’ve mastered the art of saying, “I’m fine,” when the truth is far from it too often. This facade is a coping mechanism, a way to shield myself and others from the harsh reality I endure. It’s a conflict between presenting a brave front and acknowledging the pain that is ever-present.

Yet, amid this struggle, my spiritual life has been my anchor. Prayer and faith have provided a refuge, a source of strength to counter the incessant suffering. My relationship with God energizes my spirit, lifting me above the physical pain and limitations. It’s a daily battle, but one where my spirit often emerges victorious, fueled by a sense of faith to pull me away from the darkness of MS.

However, don’t mistake my faith and how I present myself as an absence of struggle. Chronic illness is a relentless adversary, and living with it for decades demands an extraordinary level of strength. It’s a strength that goes beyond the physical, delving into the emotional and spiritual realms. I  envision myself with a neon “S” emblazoned on my chest, not just as a symbol of survival, but of triumph over adversity.

In the face of MS, I have become Superwoman. I prove it every day by persevering, by pushing through the pain, by maintaining my faith and uplifted spirit. But even Superwoman has her moments of vulnerability. I am human, after all. I am a woman who has faced unimaginable challenges and continues to roar in defiance of them.

The journey with Multiple Sclerosis is one of constant evolution. It has shown me how much more I was to endure when I was already stretched beyond where life was already unfair. It stretching me as it stole my mobility 17 years ago and keeps forcing how resilient my stretch and bounce back I might have left. The value of inner strength, the importance of a spiritual anchor, and the power of resilience is all tested in such extreme ways, sometimes it hurts to breathe. Despite the physical limitations, my spirit remains unbroken. My faith is a testament to the possibility of finding strength and hope in the darkest of times.

So, to anyone living with a chronic illness, know that your struggles, your pain, and your triumphs are valid. You, too, have the right to wear that neon “S” on your chest and declare yourself a warrior.  We must keep fighting our battles, roaring our defiance, and seeking solace while finding ways to reinforce our inner strength. I am woman, hear me roar! }...▪︎

Icerlene Jones-Wiley