I Live With A Gladiator - - The Sickle Siren
What have I learned…well first off the “X-factor” in
everything is “people,” when I say people I mean their promoted passions; their
inherited or self-determined purpose, and of course the manifestation of their power
and how it is used… “for or against “…more on this a bit later.
For several years I've watched my wife meet the
challenge of living with Sickle Cell Anemia. Forever a private person, she
didn't often share the depth and breadth of her struggle. As for me, I didn't
know much about it - - I had read a few things, heard a few things but never
witnessed its wrath up close and personal…and believe me “wrath” is not a
dramatic word - - Sickle Cell Anemia, is no joke.
When time and inspiration meet, she writes. This is an excerpt from a recent journal entry that is also included in her one-woman show.… “every now and then I hear about a Sickle Cell
patient who has died I ask the same question every time. Why, how did they die?
But I don't think the answer is simple. I'm sure there are a lot of things/issues
stacked high that led to that end for them. And I'm not sure I want to know really. It's too close to home. It's like there's a serial killer in your
neighborhood and two of your neighbors, on either side of you have already met him.
And I am just his type.”
Sickle Cell Crisis
and Courage
For several years I've watched my wife meet the
challenge of living with Sickle Cell Anemia. Forever a private person, she
didn't often share the depth and breadth of her struggle. As for me, I didn't
know much about it - - I had read a few things, heard a few things but never
witnessed its wrath up close and personal…and believe me “wrath” is not a
dramatic word - - Sickle Cell Anemia, is no joke.
One night I saw her in a “real crisis” and it changed me….
Ya see I am (was) the fixer but the emotional state that comes with not being able
to “fix this” left me feeling utterly helpless.
Unfortunately, that wasn't the last time I saw her in a struggle for her life. The silver lining in these thunderstorms is that those moments sealed us as a couple, bonded us, and though I wasn't on the front line, as I couldn't be, we fought together…I did what I could - - sometimes it was just to get a blow dryer so that she could increase her body temperature or a quick run to a medicine pouch to grab a prescription. Most of the time, all I could do is hold her hand; kiss her on her forehead, and remind her of how important she is to me and Jah’ Bre’el (our son).
Unfortunately, that wasn't the last time I saw her in a struggle for her life. The silver lining in these thunderstorms is that those moments sealed us as a couple, bonded us, and though I wasn't on the front line, as I couldn't be, we fought together…I did what I could - - sometimes it was just to get a blow dryer so that she could increase her body temperature or a quick run to a medicine pouch to grab a prescription. Most of the time, all I could do is hold her hand; kiss her on her forehead, and remind her of how important she is to me and Jah’ Bre’el (our son).
She tries her best to maintain “a grace under fire,”
however, for the most part, she has to focus
her attention on enduring the waves of intense pain that keep coming like the
rush of a tsunami. She is a punch-drunk boxer during these moments, but she is
not afraid to fight, as she did not inherit the choice.
Because Sickle Cell does not have a great deal of awareness (as compared to other health issues that affect far fewer people),
Dr. Abdullah Kutlar, Director of the Sickle Cell Center at Georgia Regents
Medical Center, encouraged her to step up and be a voice - - to create an awareness that could support funding for research, etc- - in essence become an
activist and advocate for the cause. She was reluctant at first but the seed
was planted.
Fast forward about a year or so - - she has gotten a few more difficult victories, but there is always the constant threat of the next battle on the horizon. Couple that, an interim, with the ebb and flow of her energy levels - - but through it all, she
came up with a show, a one-woman theatrical performance, wherein she shares more
of this testimony uniquely and creatively. The show is called Sickle Cell: Crisis and Courage. It’s an
honest, raw, and powerful story of triumph after triumph.
On February 28th of this year, she had her first performance
at the University Hospital Auditorium which was sponsored by Georgia Regents
University Women’s Studies Department and led by Dr. Seretha Williams. She is the
author and performer and I directed and produced this show…It was a triumph
creatively, but the reality of a pain that distorts her pursuit of happiness
continues to be humbling. For me, a journey begins, for my wife the struggle
continues.
In my life - - my wife is my “x-factor,” our understanding, acceptance, and love for each other make all the difference…because of who she is, and what I am, we now know what will be a significant part of the life’s work we will do. She has fought so many battles and by God’s grace, she’s winning…I am married to a gladiator, a warrior - - the Sickle Siren is sounding the alarm for the cause of Sickle Cell Anemia. Join us in this journey.
We have future engagements in the works in various parts of the country.
In my life - - my wife is my “x-factor,” our understanding, acceptance, and love for each other make all the difference…because of who she is, and what I am, we now know what will be a significant part of the life’s work we will do. She has fought so many battles and by God’s grace, she’s winning…I am married to a gladiator, a warrior - - the Sickle Siren is sounding the alarm for the cause of Sickle Cell Anemia. Join us in this journey.
We have future engagements in the works in various parts of the country.
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I was also married to a someone with ssd for 30 years my warrior passed away last. Year,he fought so hard but scd finally won. Take care of your beautiful wife.. God Bles You both
ReplyDeleteThanks for reaching out...and yes..I will take care of her the best I can...many blessings to you my lady...
DeleteBeautiful Story of Support!! I too am a survivor of SSD(SS) so I know what she fights through,may she continue her advocacy & remain Strong!!!
ReplyDeleteMonica,LA
Hi TrinitysMom,
DeleteWe are so blessed to know true peace. One can only know peace through the experience of turmoil.
Thank You for caring enough to comment and stay strong we are Sickle Cell Soarers (fly like an eagle).
With Affection,
Sickle Siren
I have Sickle Cell Anemia and I know the true burden of this disease. Not only do I have it my sister had it and dead four years ago and I had a cousin die from these 10 years ago. Not only have I had family members but countless friends die from this disease. I am so happy that you shared your story with us. You don't know that hearing stories like this is the silver lining when dealing with this disease. Thank you again for sharing with us.
ReplyDeleteHi Sed,
DeleteThank you for sharing that with us.
I have a One Woman Show entitled Sickle Cell:Crisis and Courage. And in the show I talk about my big brother (11 months older than I) who died at 28 of Sickle Cell. My ex husband also had it and I saw him suffer immensely. I lost two babies in that marriage who would have undoubtedly had the disease and I recently began to experience quite a bit of challenge.
The closing lines of the show say:
I was Sickle Cell's sister, I was Sickle Cell's wife. I was Sickle Cell's mommy...almost..twice. They all went the way of Sickle Cell and I thought that I'd go with them but by the Grace of God, I'm not Sickle Cell's victim.
I wish this for you today. We are Sickle Cell Soareres (Fly Like an Eagle).
With Affection,
Sickle Siren
If you are ever in Oklahoma City please contact me Beverly Brewer brewerbev4@gmail.com my grannie son has Sickle Cell and I'm about going shining and been a light for him so that he will always know he will never walk alone and have perfect peace from the Father above through me....!
ReplyDeleteMy beautiful grannies LIl Jaraye has Sicle Cell and yes its a red siren that goes off when he's in crisis....every day God is given me and his mom Arealwomen Rogers greater insight through article and newfound friends we have met on FB. My prayer group has already prayed the prayers of blessing over his life. As for me I will walk in the light of God love and shine for my grandson. God gave him too us for a reason regardless of all the roadblocks he will face he will not walk it alone....our Father who created his little soul has made that perfectly clear to us.
ReplyDeleteI've posted you link on my webpage on FB please connect I would like for you to be on my boardcast in the near future.......stay blessed in God spirit and much success to you♥ Bev B. brewerbev4@gmail.com
This comment has been removed by the author.
DeleteHi Beverly,
DeleteIdky but I feel extremely akin to you. I hate to see babies/children suffer. If there is anything I can do, any advice I may offer call me. 7062848303.
I would love to do your show. In fact my dearest and I may have to make a special trip to see you. Check out my blog Navigating Sickle Cell: Thinking My Way Through Parts 1 and 2.
Part 1
http://navigatingsicklecell.blogspot.com/2012/04/thinking-my-way-through.html
Part 2
http://navigatingsicklecell.blogspot.com/2013/06/sickle-cell-crisis-thinking-my-way.html
Jaraye Soar baby! (Fly Like an Eagle Over Every Adversity)
With Affection,
Sickle Siren
Thank you guys for all of the support and acknowledgement of this article...we invite you to stay in touch with us....
ReplyDeletehere's my wife's Facebook page: https://www.facebook.com/sicklesiren?fref=ts
and here's mine: https://www.facebook.com/anthony.r.page
Absolutele beautiful. Thank you for sharing. I have SCD as well. I'm actually writing this from a hospital bed. I also have 4 children, three of which have SCD as well. Keep fighting, remain strong for your wife. You are a blessing.
ReplyDeleteThank you for responding...know that you are in our thoughts and prayers...we know how difficult it is for us, we can not even imagine what you face daily...we are sending much love to your kids, and may GOD keep you and your kids...
DeleteAlicia,
DeleteAs far as I'm concerned, you have an "S" on your chest for Super Woman. I can only imagine the kind of mother you must be. Kind, patient, attentive and above all prayerful. I couldn't make it as a mom without the Lord bc I don't have the power to keep him from all harm, dangers seen and unseen but He does.
Understand that where there is no cure for me and you there may be one for your kids if under thirteen years of age . Bone marrow transplant requires a suitable match but is not as harsh and unstable as it used to be. If this is something you are interested in getting more information about contact me at lavedale@gmail.com.
You have a house full of Sickle Soarers (All Flying Like Eagles)
With Affection,
Sickle Siren
La'Veda Page Sickle Siren
ReplyDeleteHey guys if you know a beautiful child with Sickle Cell jump on this and let them receive royalties for life!!!!
Sickle Cell Disease Association of America, Inc.
We want to see more children!! The deadline for our National Child Ambassador search has been EXTENDED TO FRIDAY, JUNE 21ST!!!! Get your application TODAY @ http://www.sicklecelldisease.org/!