When her hands stopped working and her mind was a bit fuzzy from the pain medication my friend Brooke Webb Smith asked me to write her backstory.

After she read it, I could tell she was hesitant to share it. I think when she saw her raw emotions and the reality of her situation, in black and white, she felt exposed. She was confident she would get better, and she didn’t want people to think of her as “the sick girl”. She did tell me that she was glad her history was written down, so that she could share it with her children and grandchildren one day.

I had no idea that this backstory would actually be her obituary. And a tribute to a life that was cut short too soon.

These thoughts are hers, she just used my hands to tell the story.

“My Story: Brooke Webb Smith

To say that my whole world has changed overnight feels like an understatement.

Until recently I was balancing a (more than) full-time career, a marriage and raising four beautiful sons ages 17, 14, 8 and 6.

Or at least I thought I was balancing everything.

My body had been trying to give me signs to slow down, to make a change. But I ignored it all. I realize now that there is not a human being or animal on earth that I would have mistreated as I mistreated myself.

So God decided to slow me down. Way down.

I don’t know why this is my course, but I feel strongly in my core that I am on this journey for a reason. My hope is that maybe someone can benefit from my story, so I want to be vulnerable enough to tell it the right way.

My name is Brooke Webb Smith; I was born and raised as a Southern girl in Atlanta, Georgia. I went to the University of Georgia and studied journalism, but my dad told me I had to get a real job and make some money.

My father knew a female executive at Coca-Cola who took a liking to me. She asked me if I had ever considered working in marketing because she felt I had the right personality and skill set. Then I lucked out. Like Willy Wonka and the chocolate factory, I got a golden ticket: an internship in the marketing department at Coca-Cola.

My father always said, “you don’t have to be the smartest person in the room; don’t try to be. But find the smartest person in the room, get to know them, and listen to what they say.”

I had heard that so many times growing up that when I got the chance for that internship I jumped on it. My natural curiosity kicked in, and I loved learning from experts. Marketing became my passion.

When the internship was finished, I bought some marketing books, took some courses in communication, and realized I could do this.

I was hired by Vicinity Manufacturing as a marketing coordinator and started my career in the Microsoft Dynamics channel. I knew nothing about ERP or CRM. I barely knew about Microsoft. In my job interview, Randy (then my boss, now my husband) asked, “What kind of notebook is your preference?” I thought about it for a second and said, “college ruled.” Of course, he was talking about a laptop. But I still got the job.

In the last ten years, I have loved working in the Microsoft Dynamics channel. Recently I joined a team of very talented people who were launching a new product that I was sure would make a huge impact in the industry. The marketing role was a big undertaking, but I embraced it completely.

At the same time, I had the opportunity to be involved in what I call a “passion project”: building a membership-based marketing organization from the ground up.

Everything seemed like it was going well.

In 2011 after the birth of my last son I noticed that my toes were becoming numb. I didn’t think a lot of it at the time. I loved high heels. In college, I was a competitive tennis player and injured my spine. So I just figured it was some temporary discomfort.

As the months went by, the numbness continued to spread. Then tingling started. It would feel like my foot was falling asleep. Once I was on an airplane for a business trip; when I got to the lavatory, I realized I was barefoot. To my horror, I had walked out of my shoes in the aisle, and I didn’t even feel it. I could step on something hot and not feel the touch, just the pain.

I finally told my doctor. He tested me for diabetes since peripheral neuropathy is often a symptom of diabetes, but the test was negative. Basically he said, “That’s weird, why is your nervous system messing up?”

And that started a chutes and ladders game of going to specialists. For nearly three years I went from podiatrist to orthopedist to neurosurgeon. Finally, they did an EMG, a nerve study test that clearly showed that I had severe peripheral neuropathy which is damage to peripheral nerves that results in numbness and pain. This can be caused by traumatic injury, toxins, infections… The most common cause is diabetes. But as far as I knew I didn’t have any of these triggers. Because nobody knew the cause, they could only treat the symptoms. I was sent to a pain clinic where the doctor prescribed opioids. I said “I’m 35 years old, I cannot live the rest of my life on opioids. I won’t; it’s too dangerous.”

The burning and stabbing pain started going up my legs, but I was still determined to commit fully to my career and my family.

Constant pain was affecting my moods, making me depressed; it affected my social life. Because you can’t see pain, it is hard for some people to understand how it limits you.

Then I started falling. I started having difficulty driving my car (one day my foot just stopped working; I couldn’t engage the clutch and nearly had a car accident.)

I tried Eastern medicine, acupuncture, meditation and breathing, CBD oil, Chinese herbs, and supplements. The only thing I didn’t change at the time, but I should have, was diet. I wish I had thought of that sooner as it turned out to be a root cause of all my inflammation.

In October 2017 doctors were finally was able to put a name to the disease.

My neurologist did a spinal tap and found elevated protein levels. They did CPC blood tests, an MRI, and a nerve biopsy. And they came back with a name.

CIDP - Chronic inflammatory demyelinating polyneuropathy, an autoimmune disease much like Lupus and MS. Another more common form is called Guillain-Barre syndrome. CIDP is progressive and degenerative.

At some point in the past, I had a virus like the flu, and this disease remained dormant just waiting for the opportune time to flare up.

The way I’ve tried to explain it to my kids is that we have antibodies that are supposed to protect us from viruses. But my antibodies are confused and attacking the wrong things. There is a fatty coating called a Myelin that covers nerves. My antibodies are basically attacking that fatty coating, leaving my nerves like live wires.

Think of an electrical cord with plastic coating to protect you. My body is taking away that coating. As a result, my nerves fail to respond properly. Instead, they respond with numbness, tingling, and severe pain. 40% of people with CIDP end up in wheelchairs as the disease attacks the brain.

When I learned all this, I was pushing my body by working ridiculously long hours at a tradeshow, trying to handle every detail and hide the fact that I was in constant pain.

I had this great job that I loved, I felt I was creating something special, and now I was being told I had an autoimmune disease. Some mornings I woke up and my feet didn’t work.

We discovered the National Foundation for Peripheral Neuropathy (FPN). Studies were being done at Northwestern and John’s Hopkins, so we spoke to neurologists there.

At the same time, Randy was trying to run a company, and I was still working full time and raising a family.

I was afraid if people found out they would view me differently. But a counselor told me that I had to tell the people that were working closely with me so that if I didn’t show up, they would know that I was not just flaking out. I had to make people realize that this was not something small; this is what I would call “a big sick.”

I woke up one morning in January, and all the fingers on my right hand were numb. I realized it was spreading. Quickly. I still didn’t tell anyone; I just took that day off. Randy and I got really serious and through referrals from Johns Hopkins found a neuro-muscular neurologist at Emory here in Atlanta. She agreed to take my case.

When I went in for my appointment, I had a binder with three years worth of test results, but the doctor said, “we are going to start over.” Right now the diagnosis is still CIDP but she is also testing for leukemia and blood cancer and other possibilities, trying to determine if my new symptoms are related to CIDP or a second autoimmune disease.

I had to resign from my job in February. There was a process of having to accept the diagnosis. Every time I lose something, I can’t get it back, and it’s not curable. I had to process that, and it took me a while. Losing my career, which had become so much a part of my identity, was extremely difficult.

To celebrate my new found free time, my family went on a Disney Cruise. Instead of partying on the Lido deck I was quarantined for five days in my stateroom, then spent two days in the ship’s hospital. As soon as we got back to Atlanta, we went to Urgent Care, and I tested positive for Influenza A.

In fact, everyone in my family had the flu. My husband and I shared the couch for a “Marvel Movie Marathon.” But my symptoms were the most severe.

I started having chest pains and trouble breathing. I spent March 7-9 in the hospital because my oxygen levels were critical. It turns out that the flu caused a major flare-up of the CIDP. I went into the hospital walking on my own and came out dependent on a walker.

That is when everything really changed.

I was released from the hospital to palliative care and pain management from home health hospice nurses. This doesn’t mean I will die in 6 months, but I have a chronic illness.

I have a physical therapist, an occupational therapist, a skilled nurse, and a social worker who come to my home to help me. I also have a palliative care nurse who can give pain medication. Simple things like brushing my teeth are a challenge; I can’t even shower without a nurse’s help.

So much has been taken away so fast and it has been very tough.

The numbness has spread to my hands. Fortunately, my thumbs still work, so I can still text: a small blessing.

I am still in the middle of this flare up. There can be remission between flare-ups, but this one is so intense that I pray every day I will survive it. There are options for treatment, but it is a battle. The American healthcare system doesn’t make it easy.

At the end of last year, my doctor ordered five treatments of Intravenous Immunoglobulin (IVIg) to infuse my body with powerful antibodies (immunoglobulins - like little antibody Ironmen). It is the most promising treatment for my condition. (Thank you to all the people out there who donate blood platelets; I love those people). With this treatment, the nurse, machines, and medications arrive at my house, and I am hooked up, like dialysis or chemo treatments, for five hours a day for three days. This happens every 4 to 6 weeks.

The first treatment was scheduled, and I was so hopeful. But it was denied by my insurance because of the $18,000 per treatment cost. We tried again, and the treatment was denied three more times. My insurance company also denied my most recent hospital stay and sent a bill for $32,000.

So now we are in a waiting game. Waiting for the next step. Waiting for the insurance company to realize we have tried all other options.

But at least I have realized there is one thing that I can do to heal my body. There is so much I can’t control in this situation but what I can do is control what I eat. When I was searching for alternative remedies and learned about inflammation in the body, several people told me to change my diet. I wish I had listened, but I was taking care of myself last.

At the hospital, the nutritionist put me on Autoimmune protocol (AIP) diet – like a rigid form of Paleo. No gluten, dairy, sugar, alcohol, nightshades, etc.

Since I can no longer cook, Randy found a company that delivers meals based on my dietary restrictions. Right now I am trying to focus on what I can control, and that is what is getting me through.

We don’t know if this flare-up will pass or if the disease will continue to progress. At this point, our goals are to:

#1 Make sure we have the correct diagnosis.

#2 Find treatment to slow down mobility loss.

#3 Regain some of the motor skills I have lost.

#4 Keep me out of a wheelchair.

A lot of damage has been done, and it has been very difficult for my family. They don’t know if I will wake up to a good day or a bad day.

It’s hard when you are in chronic pain, but nobody can see it. Nothing black and blue, nothing bleeding.

That was hard for my husband, Randy, in the beginning, but he has become a solid partner. He has shouldered this responsibility and carried me, sometimes literally.

My hope is that this flare-up ends soon and I can begin some contract marketing work and gradually come back into a “new normal” life. Whatever that looks like.

In the meantime, we have gone from two incomes to one income; we have a son going to college, and astronomical medical bills. The financial worries are crushing.

The isolation and loneliness are bad. To move with a walker in an empty house alone is like being chained. And I look at elder care completely differently now.

So, that is my story. This is me right now.”

The Epilogue

A few weeks after the writing of this story our dear Brooke fell asleep in death. Her poor body was no longer strong enough to fight the pain. She was 38 years old.

When I got the call from Brooke’s husband, Randy, I was numb with shock. I had just spoken with her. She had sounded so hopeful.

Brooke wanted to use her illness to help other people, but she was not sure yet how to do that. I can confidently say that knowing Brooke helped me in many ways. And I know many others who also felt her impact. My friendship with Brooke taught me:

Don’t push too hard. Listen to your body when it is giving you signals to slow down. Eat well and take care of your body before you get “a big sick.”
Tell people. When you are sick, don’t be afraid to tell people and let them give you the support you need.
Be curious. Brooke wanted to know more about everything and try new things. We all need that curiosity. Several years ago I mentioned her as a visionary in my post “14 Life Lessons I Learned from Strong Women in the Dynamics Channel.”
Give compliments. Some of the things Brooke told me were the nicest compliments I have ever received. Too often, we only think it. But Brooke said it. I will treasure her words.

And the biggest lesson Brooke taught me at the end….

Don’t wait. Don’t be too busy to send the card or make the phone call. No matter how optimistic someone sounds, when they are dealing with a serious illness, you don’t know if tomorrow will be a good day, or a bad day, or the last day.

In Her Memory

Brooke was a creative marketing professional, a colorful storyteller, a podcast fanatic, an avid reader and a connoisseur of beautiful things. She was passionate about education and the success of marketing professionals.

To honor her memory the Brooke Webb Smith Memorial Fund has been set up to inspire and educate up-and-coming marketing professionals. Consider donating at: www.bwsmf.org

I will miss this beautiful Southern lady. But I feel confident that I will see her again and we can pick up where we left off. But as my friend Brooke used to say, that story is “a whole ‘nuther bottle of Bourbon.”

By Anya Ciecierski, Collaboration Works Marketing

www.cwmktg.com

Follow me on Twitter: @AnyaCWMktg

Update: Check out the national initiative to help raise awareness on new ways to help those suffering from Peripheral Neuropathy. https://www.drugscience.org/neuropathy/