A Disease Arrived on My Doorstep

A DISEASE ARRIVED ON MY DOORSTEP

I grew up in a healthy family during the sixties and seventies in the clear mountain air of Colorado, and by most standards had a good childhood. We ate home cooked, well-rounded meals right off the food pyramid that circulated in the sixties and sparingly enjoyed the prepackaged, prepared frozen dinners that were all the rage at the time. I was involved in scouting, book clubs, and social groups.

When I was diagnosed with Crohn’s disease at thirty, I had been happily married for nine years, had four young children, had lost a quarter of my normal body weight, and was so malnourished that walking up a short flight of stairs had me sitting and resting at the top. Eating an orange had me doubling over in pain, and VHS videos had become the babysitter of my young ones while I lay on the couch. Going out of the house to eat or participate in any activity was a cause of pain, embarrassment, or struggle. I had no idea how I had gotten to this point of ill health, only that my symptoms had worsened over several months to the point where I had to admit that something was not right.

I am not sure (after being mis-diagnosed with rheumatoid arthritis and the flu) how I came across the female internal medicine doctor, but she put me in the hospital, did the correct tests, and finally diagnosed my malady as Crohn’s disease. I remember her as somewhat of an angel. As most of the acute symptoms subsided, I was ecstatic in the prednisone drug-induced high,—thinking all my problems were solved and I was on the road to good health. I quickly realized the fallacy in the belief that feeling better equaled being healed when my angel doctor informed me that I had a chronic disease with no cure that would only get worse with time and included a possible surgery within five years.

Medications in 1990 were limited and I was allergic to two of them, leaving not much in the way of conventional medicine to manage my disease short of the promised surgery and some lifestyle changes. There was no book on what those lifestyle changes meant other than ‘maybe it is the food you are eating.’ Considering at the time I was not eating anything that didn’t cause distress, that only fueled my frustration. As my heart sank lower and lower, I realized that my real issues with this disease had just begun.

I felt very lost, alone, and scared, but I see this now as the catalyst to how I was able to adopt an ‘outside of the box’ thinking. There were no real answers, so I needed to find some. A ‘disease’ came as a surprise to me, as I had never been exposed to anyone so chronically ill. I had no references, so I had no illusions about what conventional medicine could or could not do or even if I should follow the limited protocol available. Going to the doctor until then had consisted of prenatal and childcare appointments, all normal ‘health care’ related, and none requiring any lifelong management.

I was not a fan of the medication and its side effects or the surgery prognosis and soon found myself refusing to believe that those treatments were even a long-term option for me. Even with the pain and acute symptoms I was experiencing, an independent nature surfaced, and I made the decision that if the disease was manageable, I was going to try to manage it with as little medical intervention as possible. I was lucky to have the support of my ‘angel doctor’ who opened my eyes to the importance of taking care of myself with some alternative therapies, and honestly just looking outside that conventional medicine box. I had no idea how I was going to accomplish managing this illness or what it would look like over my lifetime, but I vowed to find a way and give it my best shot.

The path I ultimately followed was not wholly conventional or wholly holistic. There was no roadmap, and it certainly contained a lot of trial and error as I drew from a combination of the two modalities. But I can say that, just like most things in life, the end result has been well worth the struggle and well worth the effort. I am healthier today than I have ever been, and looking back it was much less of a struggle than the treatments I have seen my fellow patients undergo.

I found a grace in taking care of myself that I did not know was missing.

I found continued confidence in my intuition.

I found strength in my mind and body that served me well,

And I found the truth that when allowed,

The body can heal itself.

I wrote my first book in 2015, Live Healthy with Crohn’s Disease, and during the writing phase, many of my symptoms suddenly flared up. Reliving the struggle, pain, shame, and personal resolve I had endured brought up so many emotions. I realized how much trauma I had been through and had yet to release. The book was therapeutic in that regard. I realized full force that I had lived much of my life keeping my illness a secret. Due to shame and fear, only my closest family and friends knew I had been diagnosed with a disease. The inner call to write and help others with my story was having a direct confrontation with that fear of trying not to be seen.

Within months of that time, I felt an intuitive nudge to have a mammogram and was diagnosed with breast cancer. As prevalent as cancer is, it was not something I had personally dealt with within my family sphere, and I was again thrust into an unknown world. After having the small tumor removed, I made the decision to refuse the eighteen months of ‘preventative’ drugs, chemo, and radiation prescribed by two oncologists and instead relied on the surgeon’s evaluation that the cancer had been removed with the surgery. Having already managed a disease for over twenty-five years, and with a strong belief in the body being able to heal itself, I again summoned faith in and listened to my body. The realization hit me again of how much our buried emotional issues and day-to-day habits can play out as illness in our bodies. I pivoted, improved my lifestyle habits, looked at how I was showing up in my relationships, learned all I could about holistic cancer treatments and find myself, now over ten years later, still cancer free. I have not neglected scheduling routine check-ups and tests, and it has been gratifying to see that my healthy lifestyle habits have worked in so many instances.

I do not believe that my story is unique in having been diagnosed with these unfortunately common diseases. I do believe it is unique in how I managed them, my decisions made against the conventional norm and mindset, and belief in myself above all others. I still have Crohn’s disease and I still have cancer, but I refuse to let my identity be of a diseased victim and I refuse to live my life in worry, pain, and suffering. I have weeks that I eat too much sugar, I have months where the role of caretaker and losing a family member robs me of sleep, I stress over money, and cringe over the world we are leaving our grandchildren. I also eat well, am creative, enjoy my work, and love spending time with children helping them to see the world with awe and wonder. I help, hope, and find glimmers everywhere I go. In short, I have developed an identity of balancing the stressful modern world we live in with taking care to supply my body with what it needs to thrive—both physically and emotionally.

If you are still breathing and if your heart is still beating, then you have the power of choice– —the authority—in how you live and look at your life. We are not just the creators of our lives, but the architect. An ‘architect’ embodies not only the creative role but also the visionary, the builder, the collaborator, the planner, and the supervisor of their designs. You are the architect of your life. You can decide how sick you want to be.

“When you let go of who you are,

you become who you might be”—RUMI