Climbing Mount Healing

Climbing “Mount Healing”

            I think most people would agree that Lyme disease does exist, in some form or another. The question, however, is where does the Lyme infection go when it is not diagnosed or treated in a timely fashion? What happens to those of us who didn’t have a rash or clear symptoms after a bite or whose illness was not accurately identified for many years? What happens if the immune system does not fight the Lyme effectively? What happens is chronic Lyme disease and dealing with chronic Lyme is a hellish experience, from the struggle to be diagnosed, to the quest be taken seriously, and through the journey to be healed.

            When Lyme presents in a chronic fashion, there is not a single moment of sudden awareness that sickness has overtaken us. There is a slow but tremendously deep and confusing sinking into the pits of this very misunderstood illness. Even once the diagnosis is made and the treatment begun, there is not a clear path to “healing”. Improvement is not expected after 3 weeks of antibiotics and recovery often takes many years. Lyme bacteria are extremely intelligent, and as a result, healing is a slow and exhausting crawl out of the pit. The crawl is full of temporary peaks and enormous valleys. There are months of pure darkness and moments where some hope can be found. There is definitely no map. In the end it is a process and it is difficult and confusing to survive. The illness itself and the struggle to heal have far reaching effects, involving all parts of a person and impacting most aspects of their life. Lyme certainly touches, and often comes close to destroying a person emotionally, physically, financially, professionally, psychologically, and cognitively. Take it from me, I know, I have been there. I have spent the past several years climbing Mount Healing, searching for a time when I feel “better” or “back to normal”, and when I can finally get on with my life.

             The peak of Mount Healing is elusive. There is just not enough definitive information out there to explain this disease or how to effectively treat it. Each person’s trek to the peak is different, and they each have to blaze their own unique path. Sometimes you climb high, but can never manage to reach the peak. In that case you have to find acceptance in the place that you land.  

      From my experience, there is much more controversy than consensus in the medical and scientific communities, which has a direct impact on patient care. A true understanding of the disease is a long way off, but that is what I have craved as I find my own way through it: understanding. Understanding about what I am experiencing, understanding about what to do about it, and understanding and support from others as I continue to fight. It’s very difficult to find support when neither you, nor the medical community can adequately explain what is happening. When my own attempts to explain fell on deaf ears or were misunderstood, I would often search the Internet for information, personal stories, answers, or direction, and I found a wealth of resources and support. I also found that the information, though truthful and necessary, rarely provided me with much hope. There are posts about the specifics of traditional treatment, the struggle to be diagnosed, the seemingly endless lists of vague symptoms attributed to Lyme and each of the associated co-infections, and the many additional difficulties caused by the treatments themselves. There is endless information about alternative treatments, special diets, and therapies. It is all very important, but I was often left wondering if what I was feeling, given the situation was “normal” and “expected” and more importantly if it would ever end.

            As a result of trying to figure it all out without getting too bogged down or disheartened by others’ experiences, I started writing. That writing became what is now a series of essays that I collectively call “Climbing Mount Healing”. They are not a straightforward chronicle of my total Lyme journey, because “straightforward” and “chronic illness” are anything but synonymous. These essays deeply explore individual aspects of treatment and the toll taken by the hard work of healing. It is a crazy ride, and each day is different and unexpected on that road, making you wonder if you are heading up the hill or going back down into the pit.  I have tried to describe what the process has been like for me by putting a slightly humorous or at least somewhat positive spin on some very awful days, feelings, or situations. Sometimes, I couldn’t quite muster the energy to find the good in any of this but always, as I wrote, I would discover something new about myself as a result of what I was going through. It is my hope that these essays will ring true for others going through life with Lyme disease and that you can find some kinship and understanding here. Even more than that, though, I hope that these essays reach those who have a loved one who is suffering. I hope that my words can paint a picture that brings a little clarity to those who do not suffer from Chronic Lyme, but are trying to help someone who does. That clarity may help you realize how desperately your loved one needs your help and the best ways to offer your support. The more you can try understand, the faster they will reach the peak.