The Beast Within – Ankylosing Spondylitis

Guest Author: Shalva (Brenda) Berger

Guest Author: Shalva (Brenda) Berger

There once was a life. Within this life there was a strong, loving woman full of faith. She had encountered many obstacles in life. Yet, regardless of the obstacles, she persevered through them and instead chose to embrace the small joys that were presented by each day.

This woman adored children. She became a teacher and taught them not only academics, but also values. Revealing that every student and child within her classroom mattered, regardless of their race, background, struggles, or special needs.

This woman loved her own children as the precious gifts they were, from Gd himself. She created a home of faith, respect, and expectations. Yet balanced the home with the enjoyment of living through dance, roller blading, exercising, crafting, painting, and many hugs. She most of all loved being outdoors, the beach her most favorite place of all.

Her home was her domain. She took care of it tenderly making certain that the home created a welcoming environment with order and peace.

This woman cared deeply, not only for her family, but also that of her friends and those in need.

She even saw an elderly woman not being taken care of. This woman began to collect funds on her own and grocery shop for the elderly woman, even if it came out of her own budget. The woman and her daughter would go visit this elderly woman bringing flowers or a cake just to bring joy to this lonely soul. The woman cared about her friend’s needs. If and when she could help them through caring for their children, bringing them something from the store, provide a listening ear, or provide words of encouragement, she would do so without hesitation.

Then…her world began to crumble. She started to feel so ill. For so long she began to run from doctor to doctor due to severe pain and random fevers, of which not one of them could explain.

She was poked and prodded in ways that made her body feel like a science experiment.

One doctor discovered the woman had mono. AHA!  They thought, this is it.

However, as time progressed, so did the pain. Soon, the physician told her she had ‘pissed off body syndrome‘.

The pain increased, wreaking havoc on her body. She became dizzy, not being able to see clearly, listening to people was such a chore, and understanding what they were saying was worse. Then, her legs, arms, and body began to twitch as she lay in bed.

It was a truly scary thing.

It felt like little creatures were crawling and trying to escape her body. The spine, it was as if someone lit a fire and placed the candle inside of her.

The burning shot through her spine feeling as though the candle exploded. Yet, through it all, she was expected to keep living life, providing for her son as a single mother, working, daily chores.

The woman was sent to a neurologist. Again, with the experiments, needles being jabbed into her muscles to reach her nerves. An MRI of the brain to check for MS.

And yet….nothing.

Almost giving up hope, finally, this woman was sent to an angel by a dear friend.  This angel, this doctor gave her the name of the beast that resided within her. This beast’s name was Ankylosing Spondylitis.

The beast had a brother, the brother’s name was Osteoarthritis. The beast not only had a brother, but also a sister named Fibromyalgia.

With this family that lived within her body, her body began to betray her.

The woman she once was, became a different version of herself she could no longer recognize. The pain caused fatigue, which then turned into emotional strife.

The beast family was starting to get under control, then just as the woman was starting catch her breath and have hope, her body betrayed her further. The woman’s body began to hemorrhage. Not just bleeding, but bleeding so much it was terrifying.

Blood clots being passed the size of the woman’s hand. The doctor told her to hurry to the woman’s emergency room. She had to quickly ask the 9-year-old son’s father to get him. Her own daughter rushed her to the hospital. While there, hours later after strong medication, the bleeding finally ceased.

The woman went home at 5am pouring herself into bed from exhaustion. She slept most of the morning until about noon. However, when the woman woke up, the bleeding persisted. Again, another mad dash to her doctor and the hysterectomy scheduled a few weeks later. The woman was trying to survive on strong medications for her illness.

A medication to lower her immune system in order to put a leash on the beast that was attacking her own body, the beast thinking her own body was the intruder, thus allowing the woman to be easily susceptible to illness.

This medication is given along with chemo…not for a cure, but to try to decrease the pain. Not to mention the several other medicines including strong pain killers.

The bleeding and the woman’s body fed the monster family. The monsters were hungry, causing the woman much suffering and fatigue.  Yet, the woman needed to work and prepare for the long-term sub. The woman needed to take care of her son and ached for her daughter. The woman tried to maintain composure, but the composure was slipping through her finger tips.

Finally, the surgery. Never did the woman expect to want and anticipate a hysterectomy. Yet, she was so very sad, longing for more children. What was not expected, was that the angry beast within her would ravage her body for five hours after the surgery.

Pain beyond description of words.  The strongest of medicine (stronger than morphine) was not taming the beast within.

The woman crying for help, yet no help coming her way. Finally, her doctor walked in on the fifth hour and put the woman on so many medicine combinations to help control the beast within. After many laboring hours, the woman could catch her breath, she still was in pain, but finally fell asleep.Pain Changes Everything

The recovery was long, painful, and tiring for the woman. However, the blessings from family, friends, and community poured out to her in overwhelming tides of love. Meals, cleaning, visits, and calls. The woman never felt so appreciated and cared for in all her life.

She was healing slowly. Slower than she should be due to this ravenous beast. The beast prevents her cells from properly functioning.  Yet, it was time to return to work. The woman’s son and students needed her.

The woman returned to work with full force. Only, her body would not give way. The pain to even drive and the exhaustion overwhelmed her.

One Friday, she had worked and then was making a meal for that evening. She was supposed to spend the night with a friend. Instead, the woman had to cancel and hid in her son’s room, having a panic attack from fatigue and shaking from over-exerting her body.

Yet, she would hear comments such as, “It’s mind over matter.  If only she wished it were.

Or even, “I believe you can do more than you think you can..” aching for this to be true.

Thankfully, she saw the angel, her doctor.  Her doctor explained to her that with all the complications during the surgery, the work that the physician had completed, it was like her body went through three major surgeries. MAJOR.

The doctor explained to the woman that with the procedures and her illness, she needed to be resting.

To literally come home and put her feet up. The doctor reassured her that her body can NOT do as much as she was trying to do.

The woman was relieved.  The woman feared that this was her life…however, the angel gave the woman a little light, to hold onto for hope.

Yet, how would the woman figure out cleaning her home? Her son had worn his pants three days in a row to school because she could not get to the laundry with report cards due.

Then, a friend told her to start a “Go Fund me” account, which her daughter offered willingly. Then, the blessings started pouring down from above. Her Rabbi provided funding for 10 weeks’ worth of housekeeping. The woman also learned that a local grocery store delivers groceries for only $14 per month. The next day, the housekeepers came and she ordered groceries online. This allowed the woman to rest, as her doctor ordered.

The exhaustion wore on every part of her body making it a challenge to even move or think. She was so thankful to Gd, her Rabbi, and friends.

The angel also let the woman know that her recovery will take about a year due to her illness.

However, the time will come when she will feel stronger, and to have hope. The woman felt relief from deep within her heart.  What seemed to becoming a hopeless situation, was the reality of all she had been through.

People around her think she tends to feel sorry for herself. But when pain and exhaustion plague your body and soul…your hold upon hope turns into dust and blows away grain by grain with the wind.

However, receiving help with chores and groceries has brought the woman much needed stress relief and time to rest to encourage the healing process.

The future is yet unknown. The woman has been changed.  She is defined not only by her heart and soul, but now by her body.

Ankylosing Spondylitis, Fibromyalgia, and Osteoarthritis, the family of beasts, now make up the woman.

She now must adapt her day per this newly found family within her.

This woman, me, Brenda Berger, feels like a toddler.

I feel like I am just learning how to walk, talk, and live with my new family. Above all the obstacles in my life, this one is and will be the most difficult challenge I have ever faced.

I will persevere and continue to do my best to be a participant in life, not a bystander.  I battle against the family of beasts that live within me. Some days, I must admit, they win both physically and emotionally.

I wish I could say I were strong enough to not let this get me down, but I know that at times, it will.

I could not be more thankful for the support from my doctor’s that now carry me under their wings.  I love Gd, I love my family, and I love my friends.

While although I don’t understand the whys or hows, I am trying to accept this new person.

It may take me time to figure out how to be who I am now, mourning the loss of the woman I once was.

But once I understand the new me, I hope I can accept her, all of her.

My heart, my soul, my body, and even the beast family. With this new me, I now live to fight for my health.

My priority is prayer, praying for those around me, and begging Gd for strength to face each and every day. I will continue to strengthen my body as best I can through physical therapy.

I am on a strict diet eliminating all inflammatory agents. I now understand I will rest more as my body is in such desperate need of. It will take time, like a toddler learning how to walk. I pray I get there soon.

For those that think I feel sorry for myself or this is all in my head, I don’t and how I wish it were true. But when you can dance with the children, or pick them up, I look on with wanting eyes, wishing so very much I could. Yes, I accept that I can’t, but it hurts none the less.

My most difficult challenge in this life now, is to accept the woman I am, be happy with my lot, and be at peace with all that I have.

The woman cherishes the good days, survives the bad, but thanks Gd for them all.  I pray above all else, that you, never ever have to experience the beast family.

You just never know what they will do next.

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Walk AS One is a non profit organization with 501c3 status in Maine, USA that organizes the Walk Your AS Off campaign each year. We are an all volunteer organization that mobilizes and motivates a global community to raise awareness and address the challenges of those affected by Ankylosing Spondylitis and its family of related diseases. Join us at www.WalkASOne.org

One Comment

  1. emma gilchrist

    on May 1, 2017 at 4:15 am

    Reply

    Hi, I too have the Beast Family, that’s first time I have heard it called that. I haven’t had blood clots, that must have been hard to deal with as well. Your story sums it up perfectly. Hard when people don’t understand. Xo

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