And the Morning Were the First Day

My alarm clock patiently measures time that is left before the dawn. I have had it since my freshman year in college. I stopped counting how many times I pushed it on the floor with my pillow while sleeping and its parts splattered all over the place. It was made in Germany and I swear it would survive a nuclear attack.

I wish I was that sturdy. It is 2:30 am and I am wide awake, a hallmark of tick borne disease. Today is my first day at Sponaugle. The first day, when the microbial and genetic roulette I have been dealt will begin to untangle. I am fearfully and wonderfully made… As I lie in the darkness I am quietly praying for everyone I met yesterday.

I had arrived on Saturday which turned out to be a wise decision. My body is loudly protesting the travel and sleeping arrangements. I did not realize how much my Tempurpedic bed at home helps me to reduce joint and muscle pain. Most of my day on Sunday includes rest. In early evening I go down to the pool and try to enjoy the 85F weather. I see a group of people with PICC lines and wheelchairs so I walk over guessing they are Sponaugle patients. Sure enough.

We are sharing our stories and the destitute state of some makes me shudder. People have lost their employment, businesses, homes. There are no differences. We are all at the very bottom. The camaraderie and care of the group is overwhelming. They are teaching me the ropes. Tomorrow there are thirteen new patients arriving at Sponaugle and I am one of them.

An emaciated man who looks like he is in his sixties is slowly shuffling towards us leaning on his rollator. He takes care to calculate each step now that neurological Lyme has taken its toll. The group greets him enthusiastically and we are introduced. He has been here since October. He is slurring his speech as he tries to tell me to make my appointments in the morning and always ask for rides. He reminds me of my husband during his last year on earth. My husband would slowly push his rollator down the hall early each morning attached to an oxygen tank. He would lean on the counter as he balanced himself while he tried to fix my tea and a bowl of cereal. Then he would carefully put those on the seat of his rollator and wheel it to the table. I wonder if this man makes breakfast for his wife? They point out another patient in the pool area. They tell me she was a pharmacist at a hospital and now she is worried that she has too much brain damage to go back to her job. I can relate. Just two weeks ago I was in a grocery store and saw some of my students. I could not remember their names,  the classes or the grade they were in. One of them has grown long hair and I could not remember how he looked before.

The hands on the alarm clock move and now I need to get up. I know I will have a difficult day. I slept for three and a half hours. I get ready as quickly as I can and rush downstairs to meet my ride. I get to Sponaugle before nine and wait outside with several other patients. The door opens and I walk in to be greeted by a large picture of Dr. Sponaugle and his drop-dead-gorgeous wife. I start working on my paperwork and have my picture taken for records. I had to put some make up on this morning to cover the ashen color my skin has turned after a sleepless night and now I am glad I did! I am freezing cold and thankful I wore long pants and took a sweater. There is another saliva test for genetics and a urine analysis for heavy metals (I have already had 36 vials of blood drawn, 7 urine analyses, and a cheek swab for genetics two months ago). I have to wait for the saliva test. It must be done thirty minutes after last food or drink and I had to drink water for the urine test.

In the meantime I meet other patients. A cute Amish couple, the husband is wheelchair bound. He passes time by reading his Bible. A teenager greets me and says "Oh hi! I saw you at the hotel and did not realize you were a patient too!" A family with four sweet children that shares they have lost everything because of Lyme disease. Then a nurse comes to get me.  She does my EKG, gives me my schedule for the week and I am done for the day. My first IV is tomorrow and I am seeing both Dr. Sponaugle and the NP on Wednesday. I am glad I came at nine. By now almost every seat in the waiting room is taken and everything is hectic. It is 11:30 and I am headed back to the hotel. I need to rest. The next item on the schedule is a new patient orientation at 2:30.

The orientation is just what one would expect. A complete shocker follows. A lecture on mold and disorders causes by exposure to it. I realize, I need a new washer (mine is a front end loader and they are prone to mold), my laundry needs to move into my basement (plumber and electrician), I need to have my house inspected and remediated if need be. I have kept the house just about sterile and in near perfect condition due to my late husband's pulmonary issues but one never knows. Then I have to keep it at 45% humidity. This means I have to start heating my basement somehow so that the dehumidifier works during early spring and fall and I need another dehumidifier for upstairs. I am in awe at the damage these toxins cause. The presenter also shares some stories of disaster relief workers and their exposure to mold and toxins while helping others. Most of us realize we have a problem.

During a dinner that follows I sit next to a woman who is there with her daughter she adopted from Russia. As conversation turns to our lecture she recalls a relief worker from Chernobyl who died from leukemia caused by the radiation. At that time I was still behind the Iron Curtain. I tell her about my father listening to Radio Free Europe. That is how we learned about the catastrophe and the radioactive cloud that had shifted over Sweden, the Baltic countries, Poland, and us. The Czechoslovakian government kept the disaster secret for two weeks. Supposedly they took all steps they could to protect the citizens. It would have been great had they told us! According to government data there is no reason for concern because the radiation exposure was minimal and it is still being measured and recorded to this day. I am not sure I can believe that. But that is the least of my problems right now.

The evening ends with a more than five hour PhD level lecture on mold, toxins, neurobiology, chemistry, hormones, and tick borne diseases. I am overwhelmed and in awe. If someone can get me well, Dr. Sponaugle can. What he describes exactly matches my symptoms. I leave before he is finished.  The day has been longer that I can manage. It is 10 pm and I fall asleep as soon as my head hits the pillow.