When Words Fail
“When I was at my worst, my son encouraged me to write some poetry like I used to years ago. I thought it impossible. I thought that my life had seen the end of its significance because of this disease, but he encouraged me - so I finally gave in and went to a riverside in the beautiful town next to us. There I would sit twice a day and wait for inspiration. Even when words were not there, I wrote what it was for them not to be there. This became a window to light each day - and it helped me so much”
Glen - Age 67 - Highbridge, New Jersey
Before I got Lyme I was a public school music teacher and church and synagogue organist and had also served as a Pastor in the Protestant Church. I had taken care of a daughter who eventually died from Kidney failure and was in the middle of taking care of my wife who was in the later stages of MS. Because of the care taking obligations, I have taken leave from Pastoral Ministry temporarily, but looked forward to returning to serving in the Church. I had also begun some writing and looked forward to expanding into poetry and philosophical/religious studies. I also expected to continue the Organist/Choir Director work that I had done for many years.
The first signs of illness occurred each afternoon when my heart rate increased and became erratic, and I experienced unusual fatigue. The doctor suggested care-giving stress as the cause and that I should get more help and rest. However, it soon became neuro-psychological with increased anxiety, mood swings, panic attacks, hearing and vision problems, vertigo, word order and writing difficulty, memory loss, chemical and noise sensitivity, head "fog", anti-social tendencies, and loss of goal orientated behavior.
Because of these symptoms and as they increased I had to give up completely all musical activities, all pastoral work, my son was taken out of the house as family thought I could not care for him properly, my writing stopped and my reading became most difficult and restricted. I lost the ability to drive other than short distances and all my energy was taken in caring for my ailing wife. Friends and family members found my behavior unusual and unacceptable most of the time, and did not have a good image of me. I felt isolated and misunderstood, as well as overwhelmed with these sudden changes.
I never had the classic bull-eye rash, nor bells palsy. Because I was taking care of my wife, all my symptoms were ignored at first, accepting them as the cost of my work. Not until I talked to my pharmacist while getting my wife's supplies did he recognize it as possible Lyme, because he and his entire family were infected. Now, in hind sight it is my best estimate that I had Lyme at least one to one and 1/2 years before I went to a LLMD. This I did immediately after my pharmacist's recommendation. After the blood tests I was diagnosed with Lyme and two co-infections; Babesiosis and Ehrlicheosis. The LLMD who did the diagnosis told me that because of the psychological involvement I was suffering from late-stage Lyme.
My treatment began with three antibiotics, Cerftin, Doxicycline, and Mepton - one each for the infections. I was also given a host of supplements plus Buspar for anxiety. I took asadophelis for candida and Cod Liver Oil for Omega Three acids. I tolerated the drugs all but the Mepron, that made my head symptoms so intolerable we had to cut back. I worked with this LLMD for 3 and 1/2 years. During that time he had to take steps for his own protection and the protection of his own medical records. His office was made more secure and he had legal posters visible at the entrances. He was well aware that his long-term antibiotic treatment could cause him to lose his license. My wife's medical insurance covered a large percentage of the drug costs so that I was able to continue the treatment.
After all that time with this very good LLMD, one of my children was still very unhappy with how ill I was. I knew part of the reason was the stress of care-giving and my wife's continue decline. With my child's prodding, I was convinced to make a change to a Naturopath who used Homeopathic, Detox, Rife, Ozone, Energy Medicine and complete change of diet and exercise along with other modalities. I went through "hell" during this transition period. And it was not long after this period of change that both my wife died and my father died. This added to my stress and made recovery even more difficult. Nevertheless, I continued on this program and was very determined to recover. Medical insurance did not cover this modality of treatment.
With encouragement from the Doctor and my will power I began to improve very slowly. In the midst of this treatment my son returned to live with me. He encouraged me to begin to write poetry, which I thought I could never do - but he knew better, and I made a discipline of writing twice a day not matter how I felt. Little did I realize at the time, but this was to become a doorway out of my feelings of helplessness and unworthiness. All of this together saw a continued gradual improvement. My goals now are to continue to write, and to use any ability I have to work toward increased awareness of Lyme and related diseases through advocacy, artistic expression and education. I also want to be a personal example to others that recovery is possible and even though one is not completely cured, one can contribute to life and to others in significant ways, for by touching others, thought not completely cured, one can be healed.
I continue to take natural medications and have periods of time when I am not very well, and other times when
I feel close to normal. I have every expectation to return to full functioning in spite of the consensus that one does not recover from Lyme. I refuse to let this become a mind set for me, or a self-fulfilling prophesy. I have positive hope and live each day as it comes in total acceptance. I have realized that fear, negativity, self-pity, isolation and lack of self-worth are enemies to recovery, and to have the discipline to be my own master is just as important as any medication. To this end I look to the Energy and the Power greater than myself at all times.
Glenroy B. Wolfsen
