Marian Smartt was an active, confident woman in her forties whose days were filled with her favorite things — travel, auto racing and medicine. Through the late 1990s until 2002, she was busy raising a family and running her own business.
Marian was used to being on the road almost every weekend with her company, TrakMed. In fact, she thrived on it. She'd started TrakMed in 1997 to provide sports medical care for race drivers, and to research safety equipment and procedures.
Marian is an RN, and was the president and founder of TrakMed. She used to race a bit, and her nurse's training enabled her to see areas where greater safety and awareness were needed at the track.
Eventually a trackside medical care program was developed. Marian also had a major contract with GM Racing.
TrakMed provided a doctor, nurses, physical therapists and certified athletic trainers. Marian said that it was essentially a family practice at the track. Services were available to the drivers, their families and crew members.
Life was hectic and sweet.
It Seemed Like the Flu ... But It Wasn't
But in 2002, she found herself dealing with what she thought was a horrible case of the flu. Every muscle in her body ached. She had a headache and a sore throat. She called her doctor because she was so weak.
She was getting worried about this because she was due to go to Phoenix, Arizona, the upcoming weekend. That was going to require some serious travel since home base was Mars Hill, North Carolina.
It was essential that she be present at the track, along with all her medical staff. How was she going to get to the track in Phoenix when she could barely walk the 20 feet to the bathroom?
Marian was still sick by that Thursday.
"I was freaking out," she told EmpowHER in an interview. "And I had a new symptom. My heart was racing. I had palpitations. I was dizzy. Before I knew it I was in the hospital in a heart unit. My pulse was running between 120 and 180."
She still had horrible aches and pains, and was experiencing profound weakness.
How could this be happening? She had always been healthy and athletic. And she loved TrakMed. It combined her college degree in business and her skills as a registered nurse with her love of professional auto racing.
Things could get stressful because Marian was so busy, but she enjoyed every second of it. She could even bring her kids to work with her if they chose to come along — just one of the perks of being the boss.
Life was wonderful. Or had been — until she got sick.
Medical Professionals Have No Answers
Marian's doctors tested her for everything under the sun. They told her that they were afraid she had end-stage AIDS. But all the tests came back normal.
Marian was finally sent home with instructions to rest and follow up with the doctors if she didn't get better.
Marian said, "I didn't get better, EVER. However I tried to keep my business going by remote control. I cut back on my traveling. What happened next was frightening. After a day at the racetrack I started having seizures! My medical director was baffled."
So off she went to the hospital again. She was treated for dehydration. But it wasn't that.
"It was humiliating," Marian said. "I go to work and end up having seizures at the end of the day. The weakness was getting worse. I could barely walk so I used a golf cart for the track."
Marian in her kitchen
Work Becomes Impossible
Her brain was feeling fuzzy, her vision blurred. She ached all over. She started to avoid meeting with executives because she could only mumble. She would send her medical director, or her research director — anyone she could, rather than show up and have to function in person.
As time went on and Marian wasn't showing up, people were asking for her. Her husband Fred Smartt told her that she needed to pull it together for these meetings. She needed to be present. People wanted to talk to the boss, not employees.
She knew that Fred was right. But what was she to do? Her office was the track. Her meetings were at the track. Her business was being at the racetrack, and she couldn't function despite the best medical care.
Marian is Diagnosed With CFS
Her life was falling apart. Dartmouth Hitchcock Medical Center admitted Marian for a workup. Everyone was stumped. Marian was 45 years old and was otherwise healthy. How could such a high-functioning person be stopped dead in her tracks?
It was at Dartmouth in 2002 that she got the diagnosis of chronic fatigue syndrome.
Marian said, "My reaction was probably typical. How could some fatigue syndrome have me too weak and short of breath to walk on level ground? I was humiliated but had to use wheelchairs often."
Marian's Family Life Suffers
Her family thought she must have had a nervous breakdown, or maybe she was suffering from depression.
By this time, Marian was certainly depressed — and who wouldn't be? Her dream business was about to fall apart because she couldn't travel.
She had four children, Katherine, Jennie, Bobby and Marian, to take care of. Her kids needed their mom and she could barely put a simple meal together. And nobody could figure out why this was happening.
The family had lived in Vermont from 1976 to 2002, and being athletic had always been part of life. But now, Marian couldn't ski or snowboard with her kids because if she did try, within 48 hours she would find herself bedridden for several days. Bicycling was out as well.
She started skipping the kids' school events. The fatigue and pain were overwhelming.
Medical Experimentation Still Unsuccessful
Meanwhile her doctors had little to offer. She said that she took enough ibuprofen to kill an elephant. She was on a cardiac drug to slow her heart rate. She went to physical therapy at Dartmouth three times a week.
After her sessions, she just crashed. Overwhelmed by severe symptoms, Marian was reduced to spending all the time between sessions in bed.
Marian Tries Alternative Therapies
Someone suggested acupuncture. She found an alternative medical practice. She had aromatherapy, physical therapy, massage, and IVs with vitamins. She started a regimen of supplements.
"If there was any alternative therapy I tried it," Marian said. "This went on for over a year. I had spent almost $100,00 on treatment and I was just getting sicker."
That enormous number included a year of treatment three times a week at Sojourns Community Health Clinic in Westminster, Vermont, for out-of-pocket alternative care. Then she had out-of-pocket treatment in North Carolina.
"We spent the money over a like seven year period of time," Marian said. "It's really not uncommon in the United States. So much is not covered by insurance."
Marian didn't know any better and just pushed, crashed, pushed and crashed some more.
"Nobody told me to pace myself. Everyone told me I was getting de-conditioned and needed to exercise! So I still rode my bike and walked and hiked when I could."
Eventually she began to see the link between exercise and the onset of a total crash — and the crashes were taking longer to resolve. She was getting sicker.
Marian's husband Fred making canvases and frames
Off to Asheville
The family made a move to Asheville, North Carolina, because her medical and research director were in the area. So were a lot of the NASCAR teams.
She tried to run her business by remote control. She started having meetings at her home office. Fred went to the track in her place. She would stay on the phone with him from bed.
Marian Finds Online Support From Others With CFS
"Three years into this, I found an online group of people that had this chronic fatigue syndrome at a website called Phoenix Rising. I began to realize that I was seriously ill. And I was grieving the fact that I was probably going to lose my business," Marian said.
"I found solace in this group — this virtual place where people understood my grief. I cried a lot. I was coming to terms withe the fact that I was probably going to never get better. But they offered hope."
Marian began to read about this new concept of pacing. It was such a foreign idea to her. "Pacing? But I realized the correlation between exercise and crashing."
Marian Finds CFS Specialist Dr. Lapp
Marian heard about a doctor who specialized in CFS — a doctor who understood. None of her other doctors had any idea what was going on with her, not even the people at the biomedical clinic.
"Such a misunderstood illness," Marian said, "with a downright silly name."
Seeing Dr. Lapp was going to take more money, though. He also did not take insurance, and it cost $400 per hour to see him. Marian's savings were being depleted at an alarming rate. She started to seriously worry about money.
But she knew that she needed this doctor. He would eventually diagnose Marian in 2014 as having CFS.
Time to Sell Her Business and Go On Disability
Dr. Lapp suggested that Marian apply for disability.
Her reaction was "'WHAT? I have a business to run.' I was in such denial. I just couldn't get it through my head that I wasn't going to get better."
But despite denial and resistance and struggling against the inevitable, Marian sold TrakMed in 2006, and applied for disability. She hired a lawyer and it took two years, but she was approved.
She certainly was disabled. She couldn't even leave her home to shop.
"How could I not have understood that I was disabled? I had a chronic illness. I still didn't understand fully."
Working Part-time Is Too Much
Now it was time for Marian to begin to grapple with redefining her life.
"Fast way to become poor is to get too sick to work," Marian said.
What could she do?
She tried to work part-time at a very easy job nursing. That only lasted about six months. She was so tired and weak, she was falling asleep at the wheel.
Fred started driving her to work and picking her up. On the days she didn't work she stayed on the sofa or in bed. She was not able to do housework.
Marian has been slowly learning to avoid stress as much as possible. She makes simple meals these days because Fred doesn't cook, and leaves the housework to him and to a housekeeper who comes in once a month.
"Thank God for housekeepers," Marian said.
She had to give up the nursing job for a variety of reasons, mostly because she was crashing all the time.
Marian using oxygen
New Symptoms: Shortness of Breath and Kidney Failure
It wasn't long after losing the nursing job that she started getting really short of breath. It wasn't just the normal CFS shortness of breath. This was the "Help, get me some oxygen!" kind.
The first episode happened when she was down in yet another crash. Fred called 911 because she was so pale, and she was gasping for breath. When she arrived at the hospital the oxygen saturation in her blood was 49 percent.
"Normal," she said, "is 92 to 100 percent."
They were ready to put her on a respirator but as she was getting 100 percent oxygen via a facial mask, her numbers started to improve.
She was again hospitalized then discharged on oxygen via a nasal cannula at home.
"I was really starting to get the picture that this illness wasn't just inconvenient. I mean I knew, but I had kept hoping," Marian said. "Dr. Lapp and my pulmonary doctor both believe that my need for oxygen is due to mitochondrial failure when I am in a flare or a crash."
Marian laid in bed on oxygen for four years. Now she rarely needs it. Since she has been learning to be more serious about pacing, she has had times when she could go without it. But if she pushes beyond her fragile limits, she needs to apply the oxygen 24/7.
Marian also lives with renal insufficiency, which is now leaning toward renal failure. As with her respiratory problems, it's being followed by her doctor.
She had now developed a new symptom. She calls it coma sleeping. After doing some housework, or even after experiencing some mental/emotional stress she would end up very tired.
She'd go to bed and fall asleep but then she'd be unable to wake up for sometimes 48-72 hours. She could be awakened to drink some juice and use the bathroom. But then she'd hobble back to bed and fall fast asleep again.
Marian knows of a few others with this symptom, though not everybody with CFS experiences this.
"It's frightening. My body is almost paralyzed. And I don't remember anything that happens during that time."
Marian's Mother and Her Sister Diane
Marian's sister Diane Glaze also had CFS. She had the same unexplained respiratory problem that Marian has. In 2008, Diane had to go to the hospital because she couldn't breathe.
She died a week later of respiratory failure at 49 years of age, despite being on a respirator. All of her vital organ systems failed, most significantly her lungs and heart and kidneys.
Marian and Fred brought up her then-12-year-old daughter Samantha Glaze.
Marian said, "And we are quite sure that my mother had CFS. And now my poor sweet son."
Marian's Son Bobby
Marian's Son Bobby
When Marian was pregnant with Bobby she had a primary infection of cytomegalavirus. It's a common herpesvirus infection which often has little to no symptoms but it can be passed on by pregnant women to their unborn children. Cytomegalavirus can be very serious for the babies.
Marian was being treated by doctors at Dartmouth Medical Center. Her doctors advised Marian to have an abortion, saying that the baby would be born with birth defects. Most likely he would be deaf and might have neurological problems.
"There was no way I was going to have an abortion, despite these dire warnings," Marian said. "I thought God was in control and my faith was strong. I thought to myself that even if he had problems, what better mother than me, an ICU nurse! I could handle a special needs baby."
He was born in 1986 with apparent life-threatening event syndrome or ALTE. What this meant for Bobby was that he stopped breathing from time to time. He was hospitalized several times after Marian had to resuscitate him. Once Marian's mother noticed that he had stopped breathing.
He had respiratory monitors and alarms so Marian would know when his breathing had stopped. Marian and his sisters watched him like a hawk. Fortunately, he outgrew it at about one year old. Marian thought Bobby was in the clear.
In 2003, after the Smartts moved to North Carolina, Marian noticed that Bobby was having great difficulty getting to school and was sleeping a lot more than most teenagers do. He had severe insomnia as well. He had a terrible time going to sleep, but once he did he couldn't get up.
But what put Bobby over the edge was a terrible kayacking accident in 2012 which almost killed him. It was after this that he experienced the onset of fibromyalgia.
Bobby is now 29 years old.
"He is very ill," Marian said. "He spent a whole year in bed post-accident, with awful pain all over his body. It's like the accident flipped a switch!"
In 2016, Dr. Lapp diagnosed Bobby with CFS, which is now also known as myalgic encephalomyelitis, or ME. Bobby even had an event at Lapps' office, going into shock after the drive to get there.
Lapp started an IV immediately and monitored his blood pressure and other vitals. Bobby came around without having to call 911.
Marian says that this type of event still happens at home sometimes. His heart rate goes sky-high and he can go into a state of shock. Dr. Lapp diagnosed Bobby with POTS as well.
Marian with hiker Tom Prior
The Smartts now live along the Appalachian Trail. Their location opened a surprising door.
"Mother Marian's' started in 2012 when Bobby and I went down the street to the local general store and saw four kids with backpacks, sitting looking like they were in despair," Marian said. "It turns out they were Appalachian Trail hikers."
Marian asked if she could help them. They needed a place to eat and to stay.
"So of course I brought them home," Marian said. "They loved our home and called me Momma Marian! I guess for picking them up and taking care of them. I told them Momma Marian sounded like a pizza parlor so I thought Mother Marian was a little bit better! A little more dignified! And then we put up flyers along the trail and got lots of hikers."
Marian later became involved in the Appalachian Trail community. She and Fred bought proper hostel bunk beds and outfitted the downstairs of their home as a hostel.
Marian said, "They bunk downstairs and eat and cook right in my kitchen. Often the hikers take care of me. They cook for us and clean up the kitchen and do laundry. It's wonderful. They are thankful for a place to stay and I love having them."
Mother Marian's is in one of the trail publications and they get plenty of hikers. In fact, Marian had to interrupt one of our interviews to go and pick up some hikers.
Marian also uses Facebook and Twitter a lot for her own personal socialization. She keeps up with news and politics.
"I have a small ministry where I write cards to people who are home-bound, and the elderly. I check with them on the phone quite a bit. And I spend a lot of time caring for Bobby."
Marian Discovers Painting
"I have redefined my life again. I am learning to paint."
The new enterprise began in 20015. It has been inspiring but it is, like everything else, a balancing act. Marian finds herself thinking about how to get a business going. Fred is now making custom frames for the art community in her area and other places. And she's trying to pace herself as she learns her new craft, doing her best to balance activity and rest.
A bright note — Fred recently told her that since she has been painting, her short-term memory is improving and that she is exhibiting more determination than ever.
Marian with her paints
Presently Marian is mostly home-bound and sometimes bed-bound. She avoids stress as much as possible. Bobby lives at home with her and Fred.
Marian used to be an avid reader but she can no longer get through a novel. She just can't concentrate. This is a relatively new symptom for her.
She has no more seizures. She thinks this may be because she stays home and avoids overstimulation.
And that is hard work for someone like Marian Smartt. Working and building and expanding are in her blood and bones. Even now while she is weighed down by a debilitating chronic illness, she has opened a hostel in her home and learn to paint. And in her spare time, she can't help but send encouraging cards to others who are ill.
The hotel guests may also have to take care of her, but she's there. She may be greeting them from a couch, or her bed. But she is there, with her arms outstretched to give and to experience as fully as she can muster. Even when she has trouble breathing on her own, there is a boldness about Marian, she is a force to be reckoned with even as her own life force is under assault.
Marian knows that she is fortunate to have Fred and Bobby as her companions on this challenging journey. They are a cord of three strands, not easily broken. They hold each other up and continue to make it through another day, always with an eye on which of their resources can be expanded and utilized, on what can bear fruit.
Here's to Marian, flanked by her men who take care of her while she takes care of them. Long may their lives continue to enlarge, expand and flourish, in spite of illness — with the hope of one day conquering sickness as well.
Watkins Glen: GM interview with TrakMed, 2003.
Charles Lapp, M.D., on the Effective Treatment of Chronic Fatigue Syndrome and Fibromyalgia.
Cytomegalovirus (CMV) Infection.