You Don't Know My Pain

You don't know my pain
Chronically ill for months
Feeling like I'm about to go insane
You don't know my pain
Crying out to God in the middle of the night
Asking Him to spare my life once again
Multiple issues clashing together
People not understanding brushing everything off
Family in denial because I'm always the health nut
Yet I feel so alone and in a rut
You don't know my pain
Suffering and in a financial strain
Waking up daily for months feeling drained
My circle of friends got smaller
Folks who I thought would be there bailed on a sister when I hollered
Neurological, physical to mental
This disease has wreaked harm on my body in an unfair way
I've cried out to God asking Him why am I going through
Relating to every word in the book of Job as he was tested too
Praying for a cure
A miracle
Not just for me but for many who are behind me
That will become sick with this devil disease called Lyme
People keep saying all in time
I will be healed
But when...
Whatever I need to do God please show the way
I'll do whatever you want but please have mercy on my soul and hear me as I pray
You don't know pain
I hope you will never know
As I became a victim to this disease
That hit me with a heavy blow
Live life while you have health
And don't be like me wondering...thinking...what if I had done this or that...
Remain prayerful despite your storms and never turn your back
On people like me
Because you never know if your number will be called
And if it is...trust me...you won't want to feel alone
Alone...
Alone...
You don't know my pain...

Written By: Serena T. Wills

June, 2013

Dedicated to Everyone Dealing and Healing from Lyme Disease and any Chronic Illness or Injury

Copyright 2013 (c) Serena Wills
All rights are reserved

Healing from Lyme Disease...My Personal Journey

Last September will be a month I will never forget. I was full of energy between running 6+ miles a week, African dancing, going out on the weekends, being able to play with my son on the floor, performing spoken word and do whatever I wanted to do. I had just received a full time job offer with my organization after being either unemployed or working part time with no benefits since June 2011. I was very happy and had so much planned for our (my son and I) future.

Ten days after I accepted the offer I went for a power walk with some coworkers on September 20^th. Instead of walking along the paved trails we decided to take a nature walk on the Theodore Roosevelt Island in Washington, DC. I’m all about walking and running on pavement. I’m not one to walk through trails that are full of bushes, trees and dirt paths but I figured let me do something different. As we were walking I remember feeling something on my right arm. When I looked down it was some sort of bug and it was hard to get off. I finally got it off of my arm. I felt fine as it didn’t leave a huge mark (just a regular bug bite) and we continued the walk.

Days later I remember having a deep chest cough. I didn’t know where it came from so I went to CVS and bought some Mucinex. Even my boss had commented on my cough when I worked one Saturday at National’s Stadium for an event that my organization was hosting. The last week of September despite the cough that wouldn’t go away I kept running and even went to African dance class. No one could have told me a year later that would be my last time running or dancing.

October I felt like the Phoenix as I crashed and burned accept I didn’t rise from the ashes. It went from a cough, to shortness of breath, two visits to the emergency room, heart palpitations, night sweats, weakness in my legs, numbness in my face, fingers and toes, internal tremors, severe fatigue and the list goes on.

After seeing several specialists no one could figure out what was wrong with me. I was told I had pneumonia, pleurisy, anxiety, lupus…all kinds of diagnoses. I now felt like I had the flu on top of all of this and was experiencing muscle spasms, chills, soreness in my feet, joint aches, a lot of floaters in my eyes, twitches and for some reason the right side of my body was becoming weaker than my left side.

Several weeks later and numerous days off from work my friend from college emailed me in the middle of the night on Facebook. She said she was worried after reading my numerous status updates that kept talking about how sick I was and not getting better. She referred me to her integrative doctor in Washington DC.

I prayed that morning before calling and that maybe…just maybe this doctor had some answers. I called the day I read her email which was on Tuesday, November 20^th and spoke directly to Dr. Sakiliba Mines of the The Institute of Multidimensional Medicine and she fit me into her packed schedule that day. It was Thanksgiving week and I wanted to feel better. It was only my second Thanksgiving as a mother and this is not how I wanted to start out our holiday season.

After our first visit she said from my symptoms there was some sort of infection brewing inside me and also something neurological. I brushed off the neurological piece because I just knew my brain was intact and healthy. I received my first Vitamin IV infusion that day…the first of many. She also put me on numerous supplements such as Vitamin C powder, Magnesium and a Probiotic.

After a sickly Thanksgiving I came back to DC after traveling from New York City and leaving a worried grandmother and family behind and got an MRI and a ton of labs done (Comprehensive Blood Panel). The MRI came back the very next day. I sat with my doctor and my eyes went right to the bottom of the report that stated there were not only spots on my cerebellum (small part of your brain which controls a lot of your motor skills, anxiety, emotions, etc) but inflammation and unspecified matter particularly on the right hemisphere of the brain. The diagnosis on the sheet of paper said, “Worrisome for this age group…potential Multiple Sclerosis.” I’m glad I was sitting down because I would have fallen to the floor because I began to feel faint. I began to sweat and tears rolled down the side of my face.

My doctor read the report twice and looked up at me and calmly said, “I’ve seen these results before in my patients with Lyme Disease…it mimics MS and a lot of other disorders.” She knew I was upset and gently spoke to me by telling me, “I faith in you and you will make a full recovery.” We stood up and before I left her office to go do more lab work she hugged me. I’ve never had a doctor hug me before. She was just what I needed at that time…someone caring and compassionate. I did more blood work that day which included a Western Blot/Lyme titer before receiving another Vitamin IV infusion. A few days went by and on December 14^th I received a call from her office that the test came back positive.

I was relieved to have a diagnosis but I thought that Lyme couldn’t be hard to cure. Not knowing at the time that there isn’t a cure (well at least on the books) but the bacteria can go into remission. December 14^th, 2012 started my Lyme healing journey.

So you might be asking yourself…what is Lyme Disease? According to Wikepedia this is what they say, “(Lyme borreliosis) is an infectious disease caused by at least three species of bacteria belonging to the genus Borrelia.^[1][2] Borrelia burgdorferi sensu stricto^[3] is the main cause of Lyme disease in North America, whereas Borrelia afzelii and Borrelia garinii cause most European cases. The disease is named after the towns of Lyme and Old Lyme, Connecticut, US, where a number of cases were identified in 1975. Although it was known that Lyme disease was a tick-borne disease as far back as 1978, the cause of the disease remained a mystery until 1981, when B. burgdorferi was identified by Willy Burgdorfer.

Borrelia is transmitted to humans by the bite of infected ticks belonging to a few species of the genus Ixodes ("hard ticks").^[5] Early symptoms may include fever, headache, fatigue, depression, and a characteristic circular skin rash called erythema migrans (EM). Left untreated, later symptoms may involve the joints, heart, and central nervous system. In most cases, the infection and its symptoms are eliminated by antibiotics, especially if the illness is treated early.^[6] Delayed or inadequate treatment can lead to more serious symptoms, which can be disabling and difficult to treat.^[7]

When I found out the news I called my grandmother. I know it was hard for her to digest the fact that I had an illness. According to her she didn’t think it was fair. I had been through enough in her eyes. I totally agreed. I told numerous friends as well that live in the area as my family is a few hours away. I did receive support but some were very fearful. I also heard my fair share of comments and opinions from people. Enough to drive me to tears. I was saddened by the various comments and became depressed and felt isolated at times.

Looking back I don’t think some people knew what to say. They cared about me and wanted the best…but sometimes what might be best for others won’t be for you. They didn’t think about my job, my medical team that God blessed me with and my inner peace living in the DC area compared to the NYC area. I decided to stick it out and I prayed! I pray morning, noon and night. I don’t start my day off without prayer and at night I’m praying in my prayer room (I transformed my walk in closet at that time into my prayer closet). At the end of it all…I’m never alone because I have God on my side. Meditation and yoga also became key to keeping inner peace.

God blessed me with new friends to add to my circle during this time in the woods. One was a neighbor, “Janice” and looked at me one day in mid-October and said, “You don’t look well.” I don’t know if it was the dark circles under my eyes, the fact that my right leg was going weak and I felt like I was dragging it along or what. But she knew something wasn’t right. This was before I really knew what was wrong. She gave me her number and she has been by my side ever since. God will send people to stand in the gap.

I not only had Lyme Disease but two coinfections, “Bartonella and Babesia” which are parasites that mimic malaria. A lot was going on and I was out of work for one month with no pay because I was still on probation being a new employee. I felt so alone…so isolated from the world. People couldn’t understand what was wrong even after I told them. Also being a single mother made it even scarier. My son was and still is my motivation to get totally well again. I won’t take living with a few symptoms…I will be symptom free one day and soon!

It’s now a year after the bite and I have had over 50 IV’s, numerous supplements, detoxification of my body (which is important with Lyme and any other illness) also the average person should detox regularly whether it’s juicing, aqua chi foot therapy baths, colon hydrotherapy, infrared saunas, massages, acupuncture, kinesiology and detox baths which include dead sea salt (or if you aren't allergic like me epsom salt) and food grade hydrogen peroxide. My diet is pristine, gluten free, dairy free and sugar free because the bacteria feeds off of this stuff.

I’ve lost a total of 25 pounds due to this illness because the bacteria got into my muscles and tissues. I plan on getting most of it back (I miss my muscle mass and fitting into ¾ of my wardrobe). I look at myself in the mirror and tell myself how much I love myself, that I am a demonstration of God’s healing and that I will make it. During this illness when I had my bad/so-so days I would work on my dreams. Sickness is a serious reality check. I told God if I check out tomorrow (and there were days when I thought death was knocking at my doorstep) that I was thankful for being a mother, having a great family, friends, belonging to a dynamic sorority (Delta Sigma Theta, Sorority, Inc) and being His servant while on earth. But if I got one more chance I would make sure that my poetry book would be published, my cafe would open, I would join ministries that I kept putting off and be the best mother I could be to my beautiful son! During the thick of the sickness I worked slowly on it but my first poetry book is finally in the hands of my graphic designer for final layout and will come out by the end of the year.

I have 10 symptoms remaining which are a lot better than the 30+ I had in the beginning. I will admit…they are daunting and scary at times but day by day I’m grateful to God. I have breath in my body, I’m able to do more, God is cleaning house from the inside out and my faith is stronger. I get to watch my son grow and develop and I thought my family got closer when my mother was sick and passed away…well we became closer during this time. Everyone is determined to see me cross that finish line.

If anyone ever tells you that Lyme Disease is a joke or is easy to heal from…tell them to call me or better yet visit my buddies on the Healing Well forum. Lyme Disease is the great imitator. It can mimic MS, ALS, Parkinson’s, Lupus, Pneumonia, Rheumatoid Arthritis, Chronic Fatigue Syndrome, Fibromyalgia and more chronic illnesses. A great doctor won’t go based on solely labs…they will clinically diagnose you because the bacteria is so smart that it can hide itself in tissue since it is shaped like a spiral, hence the name of the bacteria “spirochete”. It’s not a disease for the financially broke (and I’m broke)! About 95% of the LLMD’s (Lyme Literate Doctors) or a Naturopath, Herbalist, etc doesn’t accept insurance. It’s not that they don’t want to accept insurance…it’s the fact that this is such a controversial disease that insurance companies consider most treatments “experimental.”

But wait until the insurance companies get a rude awakening…because every year thousands of people are misdiagnosed and guess what…when they are all properly diagnosed the insurance companies will have no choice but to open up!

I plan on writing more about various health issues and figured I might as well start with myself. Stay tuned as I plan on starting a health blog and hopefully will write a column for a magazine J

If you’re chronically ill, don’t give up the fight! Keep pushing forward. You have people who love you and God is on your side. This too shall pass…I tell myself that every day and have faith that it will pass and soon.

My name is Serena T. Wills and I have Lyme Disease…but it doesn’t have me!

God speed.

Whimsical Moments

I began writing this right after my mother passed away and finally finished it. Enjoy.


Whimsical Moments

You're my air
Into your eyes I glare
Knowing that I received the ultimate prize
You as a mother
And I as your daughter
Still moments in time will be remembered forever
From watching you grace the stage with dance
Having deep conversations with me about forgiving people and sometimes giving them a second chance
From the night you held me tight when I heard my father died
Wiping away a steady flow of tears as I cried
Being my warrior through many battles
Dry days to stark nights you were my water
Pouring energy into my valley like a streaming river
Yet I don't know what I would do
Without you when God calls you home
What I'll have left are memories that will float through my brain as whimsical moments
In my heart you'll always be
Whimsical
Like cherry blossoms petals that travel through a spring breeze
Blooming Marguerite flowers in France
Praying to God that as the seconds, minutes and days go on that they will come more with ease
But for now let's share the time we have left
Creating more memories that will be kept
Whimsical moments we will always have
Beyond your last breath

Written By:

Serena Wills

Copyright 2012

Father's Day Weekend Random Reflections (written on June 21st)

As I listen to the sweet yet soulful voice of Deb Driscoll belting out, "I See Freedom, I See Freedom." I'm mellowed out. Its not your average fathers day weekend for me. I'm usually somber and somewhat depressed. But this weekend I got to work along side artists like Deb Driscoll who can belt out a Janis Joplin song to Nina Simone acapella, Matt Barron who can go from blues to a Bob Marley tune to the poetic genius of Michael Lagocki, to a visual explosion of artist Erica Davis.

It was a bitter sweet weekend as I performed for the last time as a Dallas resident at the ArtLoveMagic Fathers Day show on Saturday night at the Egg and I restaurant in Addison.

Bitter because I miss my Papa, bitter because I'll miss the creative collective that embraced my talents as a poet and writer. Sweetness as I head back east to the DC area, closer to family, work for myself as a contractor to nonprofits and continue making my dreams as a published author, reunite with long time friends and to the kids in my life.

Ahhhh the children in world are so sweet, busy and I love each of them. Such as Mr. Noah who may build an ark one day because he is so busy. Funny thing is he can't walk yet but keeps ya running! My friend Lia and Johnnie (Happy Belated Fathers Day Blaze) are moving back from Nicaragua the same time I move to VA and will have this ray of sunshine who makes my biological clock jiggle with his giggles!

One being this sweet guy here named Angel who will be 3. Character in his own right with a smile that will melt your heart.

Another being my cute nephew Dontae who is 7 going on 21. He's way too intelligent for his class and gets into trouble when he's not challenged (and he likes to talk a lot...I guess it runs in the family lol). But with a strong arm from his grandma, mom and titi Rena we will make sure he grows up to be the next Prez Obama.

To the grown, witty and sophisticated goddaughter of mine Kayla. Graduating from HS next year she has jumped many hurdles and overcome obstacles that the average almost 17 year old shouldn't face and can stand tall and say she is accomplishing her dreams by getting her education and applying for college.

Reflecting on my life in Dallas and all of my family and friends I sip on a sweet glass of Riesling as I nod my head to Aaron Garcia as he plucks those guitar strings as Deb mellows the audience with her soothing voice as she sings,"We let our own love fall behind, I'll be the first to reach out and touch your cheek" as I type stroke the keys on my blackberry making my own music called writing.

I'll miss these summer days listening to the artsy collective all over the city. On this fathers day weekend instead of moping around and feeling bad about my Papa not being here I'm happy that I'm able to share my love around the city and country through my lyrics and words. Thankful for the wonderful Dads that are in the lives of their children and for the kids and family in my life.

Today also marks the first day of summer solstice and my sista friend RiShana's birthday. RiShana has been my sista girl since 1993! Dynamic artist blossoming like wild flowers in the middle of a grassy field. Check her out around NYC through Pure LiT Productions and stay tuned for a collaboration piece soon.

Lastly today marks 9 years I met my fathers side. Ashamed growing up not knowing him wondering why he never acknowledged me. I remember this weekend in 2000 walking around the mall with my sister Shay Danee (hair stylist) and my older sister Jeannie. Shavonn I'm glad that our father had us so we could be sisters!

I always pray for Jeannie as she distanced herself from us not being able to embrace us. Its all good. God always has something planned and now that I'm 34 I can say I'm thankful the way life turned out. I'm thankful that Papa was the man in my life as he showed me true gentlemen hood, how a man should approach a lady and although quiet was full of knowledge.

Sitting on a comfy leather couch at Kelly's Eastside Restaurant in Plano, TX as Aaron Garcia takes over the mic while Deb is taking a much needed break I can honestly say this weekend has been peaceful and serene. Happy Fathers Day everyone! I hope your weekend was just as relaxing as mine turned out.

Our Father is Gone

Our father Wendell Hayes passed away nine years ago this week. It may sound crazy but although I never knew him I still loved him. It takes two and as I look as his pictures and hear the good things about him I'm glad that he wasn't all bad.

A brother confused not wanting to step up to responsibility. But all in all...I forgave him after I received word in May of 2000 after my mothers friend running into an old friend of my Dad's that he passed away just two months prior of lung cancer. I was devastated. How could I be mad at someone who was dead? I had to let it go and told him in my prayers, "Father I forgive you, rest in peace." Never laying eyes on him, hearing his voice, listening to him play the drums (which is how he met my Mom) or feeling his embrace I would never know physically how he was or felt.

His death opened up doors to another world...my other half. I have two more sisters and a brother. My older sister who shall remain nameless doesn't recognize myself nor my other sister by my father Shavonn. I pray for her and hope one day our brother Marcus who we have not a clue as to where he is will surface in God's time.

I'm happy that before he passed away he was counseling other men and women who were drinking and drugging like he used too. He was also a motivational speaker and although I call my Creator God he called his Allah as he found Islam in prison. He turned it around, but at 53 he was taken away...

I wrote this piece nine years ago and it's titled, "Our Father is Gone."

Ase to the elders that have passed, Ase to our father Wendell Hayes, Ase, Ase, Ase.

Our Father is Gone

“This is for our father. Dedicated to Wendell Hayes.”

A brother has passed
His soul lie between two worlds
He went out so fast that he still thinks he is here
His spirit is confused as to why no one is acknowledging him
When he speaks to people they keep walking
When his name comes up his children cry
WHY! He screams, IS NO ONE PAYING ME ANY MIND
If only he knew he has passed
As he begins to see the light and his life pass before him
It is becoming clearer as he sees his children light a candle and pray as one
ONE
They were never one until he had passed
All got different Mama’s but got the same daddy
Close in age but never grew together as ONE
It took him to die for them to find one another
Tragedy took place and instead of mourning I rejoice
Out of pain, he is at PEACE
No more disease, drinking and drugging
Beautiful Black Man Tell Me Why!
Why did you have to die so soon before your time?
Only the Creator knows that answer
For He will give this Black Man strength to be a father to his children
But from the other side
He can guide them through the storm, move obstacles out of the way
As I hear the talking drums from above I know it is he that is blessing me
I hear the Djembe drums at night and I know it is he that is calling me
Telling me
I’m sorry for what I have done
I’m sorry for leaving you like this
Not knowing me
ALL my life I have been looking for this Black Man and I found him
Gone
His spirit lives on through his children
But tell me WHY BLACK MAN
Why did you not recognize me?
I feel stronger cause you see…a part of him always knew me
He couldn’t admit his mistakes
It took him to die in order for me to forgive
A Strong Black Man died y’all and for what?
His lifestyles caught up
But his memory lives on
As I hear the talking drums play
I hear his hands hitting on the Djembe
As he sings an African tune to me from the heavens
DID y’all hear me
A strong BLACK MAN has died
And has gone on his way
He realizes that BLACK MAN IZ GOD
It took him to die and roam the earth to figure it out
He always had God within him and never knew it
A strong and powerful man is gone
Walked off into the sunset to join his parents above
Now they all look down and wonder why
WHY DID WE HAVE TO DIE?
As the families mourn and rejoice too
Mourn his death but bless their reunion which is long over due
Over due by twenty five years
Acceptance is not easy amongst our people
Acceptance is not easy when there are unanswered questions
The man who died has our answers
Why did he die I ask my creator?
Another one gone before his time
As I pray to the spirits and ancestors for his safe journey
And wish that I knew he
People I mourn his death
BUT REJOICE THE LIVING
Rejoice the union of my family
As we look at one another
And become ONE…

Copyright 2000 Serena Wills

All Rights Reserved

I'm one of the authors in Gumbo for the Soul: Here's Our Child-Where's the Village anthology! It's now ready for pre-order!

I'm truly blessed to be a contributing author to Gumbo for the Soul: Here's Our Child-Where's the Village! It's scheduled to drop in bookstores, Amazon, etc in November during National Adoption Month but you can pre-order your copy on www.gumboforthesoul.com

This book is special to me as it talks about adoption. Two of my gems (my sisters) are adopted. Christina is 19 years old and was born to a crack addicted mother. This is truly a compelling story as I discovered her while volunteering for my high school community service hours. Her story is entitled A Diamond in the Rough.

Ayana (deceased) was born to my Aunt Doretha in 1983. Her story is titled Against the Odds. Aunt Doretha died of AIDS complications in 1983 and my Mother promised to care for Ayana who suffered from severe brain damage and medical complications. On September 22nd, 2007 at the sweet age of 24 she passed away. I know she is protecting us and is proud of her big sister.

Please pre-order the book and support. The book cover is designed by Synthia Saint James, the forward is written by Rawsistaz Literary Group Founder Tee C. Royal and the back cover written by Bruce George (co-founder of Def Poetry Jam). The editor of this book is none other than Beverly Black Johnson who has been absolutely amazing during this process.

I'm blessed to say these are my first published pieces. God is in the blessing business. Thank you to all that have encouraged me and pushed me along on my journey. Stay tuned for more pieces to be published from yours truly. Peace.