And The Petal Gently Weeps

I’m always making an attempt to be that loving whirlwind of sunshine, smiles, and sarcastically humorous girl that so many of you know and love.

I just sometimes get tiredand I plummet.

I too… weep.

Tears, yes. But physically it feels as though my body weeps. I weep with debilitating pain, exhaustion, sadness, discouragement, fatigue, bodily insecurities, lack of purpose even. I periodically weep with defeat. Not all the time, but while in the trenches of relentless pain, yeah absolutely. All I want is a break, a release, any relief at all – I just want out.

For those that have followed my journey – you guys know some of the gauntlets this mutation has pushed me through, sometimes with a blindfold on. Every day varies. Lately I’ve been in the throes of a couple pretty bad days. Worse than the usual “bad days.” When you soar past your usual Gabapentin dosage, and when the hot baths don’t work – you assume it’s a growth spurt.. and not in a good way. When tumors grow, it’s a pretty distinctive feeling. Unmistakable. Uncontrollable. Dang near intolerable.

You go from a level of “barely there,” discomfort, to an easy level of eight, nine and tennnnn-acious spikes of “ouch!” It’s the type of surges that induce audible gasps with grimaces, verbal outcries, and sometimes will cause you to drop whatever it is you’re holding. You startle your spouse, your sleeping dog that’s laying beside you, and make strangers wonder if you’re tweaking.

Seriously, the anxiety of wondering what passers by are thinking, gets to you sometimes.

Nerves are incredible. I guess I never really gave it a whole lot of thought before. It’s safe to say that I definitely took healthy, cooperative, and functional nerves for granted. It’s easy to take advantage of something that the human body is capable of, and especially if it’s something that most everyone can do with ease. Walking, traveling, running/biking, cooking, driving, working, the list goes on. All of these basic actions for me, and many more – have been compromised, or have been taken away completely.

The role that nerves play are majorly important in the human body, and that kinda goes without saying really. But when you truly think about it…. from their ability to transmit messages, to the stimuli they control, down to their uncanny ability to harbor something they should never need to bear, (a.k.a. nerve tumors,) they adapt and evolve within the body. As a result, you adapt and evolve with them. I feel lightning, stinging, burning, slicing and carving in areas where the majority of people feel strength, good sensations and general normalcy. These descriptive pains have made permanent home in areas that’s too confidential to even blog about. So I’ll skip that over.

Ironically enough, I’m more grateful now than I ever was before. It’s just that things just look differently for me now than they did a few years ago.

Sure – the pain may have increased, but my appreciation for life and those few good days, have also increased. I’ve learned to live within the pockets of this life where pain is minimal. The temporal joys like spending time with loved ones, getting lost in a good song, training Tippet, cooking a favorite meal, going to the grocery store with my husband. These little things and so many more I use to take for granted.

Now, I revel in them. Every chance I get. And you should do the same.

TOMORROW IS ALWAYS A NEW DAY

When your life is a wavering card game, and the hand you’re dealt isn’t ideal – it’s sometimes putting on that “poker face” and giving this life game all you’ve got. Sometimes that’s witty humor, sometimes it’s being a tornado of smiles, laughter and hugs that infect joy in those around you. Sometimes it’s both!

Sometimes we will have days where we weep – and that’s okay. You’ve just gotta not stay there.

As a whole, I think it’s entirely possible to be a whirlwind of everything that is good, hopeful and radiant.

We need to be that person every chance we get.

10 comments

  1. I weeped reading your blog…can feel your descriptive pain. Love and pray for you always and forever. ❤🙏❤
    Aunt Pam

    Sent via the Samsung Galaxy S8+, an AT&T 5G Evolution capable smartphone

    Liked by 1 person

  2. Great writing as usual. Positivity is healing but always important to remember in times of feeling weak that you are only human. Crying and acceptance of your current isn’t always defeatist for those that continually bounce back. Only a release so that you can continue your growth.

    Liked by 1 person

  3. Thank you. I so needed to hear your words. I’m six months out from surgery for my nerve tumor, part of it is still in there and growing, and this pain is wearing me down. I had about 10 minutes this morning when my body was quiet and calm and I loved every moment of it. Friends and family always ask”How are you?” and I feel like I can’t keep saying, “I’m in pain.” I want to move on, but the pain is real and comes and goes on it’s own schedule. But I’m gonna be OK because I have a lot more of my amazing life ahead of me and I don’t want to miss a thing! Thank you for sharing your strength and tears. Sending peace and love your way.

    Liked by 1 person

    1. BLESSINGS and strength to you my fellow warrior!
      Always hard to explain to loved ones that we never really “get better.”
      It’s a come and go thing, some days are better than others.

      Find strength through the pain.. so much of it a mental battle. Find the warrior that lies within 💛
      Keep fighting the good fight!

      Like

  4. Leslie thanks for your words. It is conforting to read your beautiful writing that describes much of the same feelings. Spoke with John Hopkins again today & they dont have answer for walking my weakness/fatigue. Lots of tumors but cant seem to say if one of them is the cause. Discouraged. Lynn (Schwannomatosis in Virginia)

    Liked by 1 person

    1. So many do not understand that there is virtually almost nothing that medicine can do for this mutation. You and I being Schwannomatosis, well, we’re even more complicated.
      I’m also at the point, and have been, of having just SO many tumors – literally clusters on top of clusters – the surgeons wouldn’t be able to single out the greatest source of pain. It’s just too high risk right now.
      Cryoablation last year, was my last attempt at trying to find a solution for my situation. It failed. With flying colors.

      We’ve just gotta take one day at a time. 🙏❤ Fight on, warrior.

      Like

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