After fourteen years with too numerous to count misdiagnoses, this is my daily journey living with an unknown disease that has made me fully physically dependent, living by the help from my family, friends, and beloved service dog. It is how I have chosen to define myself to remain whole in spite of it.

The Search-Lorenzo’s Oil

The Search-Lorenzo’s Oil

Life can have a funny sense of timing. Some would call it serendipitous, other ironic. Sometimes, it’s just a little or way too close to home. It can be all sorts of things; watching a movie about becoming a grandparent and then being told that within days you’ll be one; buying a picture of a yellow lab on a bed and a few months later you have a yellow lab, curled up on your bed; thinking about an old friend you haven’t heard from in a while and out of the blue running into them.

In this instance I’m sharing a story about a movie I saw in class one of the last days of my freshman year of high school in the summer of 2002. Lorenzo’s Oil (1992), starring Susan Sarandon and Nick Nolte. It was a drama about a parent’s fight for their son’s life who became sick with a rare and incurable disease that greatly affected his neuromuscular ability. It highlights not only the son’s decline, but the parent’s fight to save his life, fight for their own relationship, and eventually the teaching of themselves medicine to help come up with a cure.

It is a powerful film, and certainly one I had no idea would come to resemble my own life less than three months later. In truth, my path was already set as I was already in a neuromuscular decline; I just hadn’t put all the dots together. I just remember watching, and thinking through the questions on the questionnaire, adding some of my own. Would I want to have a child if I knew there was a good chance that they would have to suffer that disease? Would I ever dare to study and teach myself medicine if it could cure someone I loved? Would I become that obsessive in that situation? When an illness like that occurs, is it normal, right for your life to revolve around it?

I don’t have the disease Lorenzo has in the film, thank God, but there are a lot of overlaps and similar experiences. Enough so that, a couple of years later when the film happened to be on TV and I watched it with my day nurse, I silently cried throughout the whole thing, despite my mammoth effort to separate myself and remember it was just a movie.

It was no longer just a movie.

I hadn’t only been sick for a couple of years, only had one near death experience, and while my mother’s and my life was dramatically different, it didn’t revolve around the illness. I had doctors, I had nurses—my mother could still keep many of her commitments, and I only had to do my best in my own responsibilities with physical, occupational therapies and correspondence school. No carrying, the torch in determination to fix me; I had doctors; I would make it and recover. I was so lucky. All I could do was pray I never got to that point; that point of total consumption.

Somehow, over the years, like everything in life, things changed, evolved, and so did our world. Too many more near death experiences, too many unexplainable occurrences, too many un inquisitive doctors. Just too many questions. Without knowing it, I became two characters in that film—the child/patient, and the father, who became obsessed with research and finding answers. I have read easily over one hundred medical research papers—with multiple screens open for searching definitions to each word that does not resemble any English language I was taught in school, (which is pretty much every other word, if I’m lucky), have way too many documents filled with notes, explanations that I wrote out to summarize what I learned, how it fits, and how the molecular biology process works.

I never sought this; in fact my one ambition over these years has been to not become a doctor. Yet the questions are merciless; they haunt me for answers.

My mother, like a superhero, found her own balance—one with her bakery business that she manages with a team out of our home, and as duo caregiver for my daily needs and advocate with the doctors. She patiently waits for me when I go quiet sometimes for days with a new thought, a new lead, then listens to my discovery, merits my thought for going forward and gives her own decisions.

We are an equal team and it works for us.

There’s just one hitch. A few years ago I came across the movie again, and I wanted to run out of my skin. You should never compare yourself to a character, or relate too much; only I couldn’t help myself in this case. I realized one insane thing: I was jealous that the son had a diagnosis. They knew what they were working from and focused all of their energy to help, to cure their son. Spoiler alert—(yet, I did say at the beginning it was an incurable disease), the film has a gut wrenching ending, that seems all too real.

A while ago a friend asked me what would we do if we figured out my illness is an incurable disease? Would it be worth knowing? My answer is yes, it would be worth knowing. After all these years I can finally, confidently, say what I have, and lay the questions and the research to rest; surely it will be easier to help find a treatment when knowing what to work with.

My own daring and confidence makes me shake my head today. All I’m left thinking is that my life has begun to resemble way too much Lorenzo’s Oil.

Mystery: Solved

Mystery: Solved

Service Dogs – Off Duty

Service Dogs – Off Duty