After an agonizing physical and mental journey the past 11 months, I’ve come to a place once foreign to me: an acceptance of a stark new reality: the need to be content with who I am now, not who I was, physically. The awkward structure of this sentence reflects my struggle.
I promised in past columns I would share my quest for medical answers and treatment of a non-fatal, but disabling and life-altering medical condition. And so I will, without excessively mind-numbing detail.
Beginning with an uncontrollable fall on Oct. 1, 2018 in a Kent Island restaurant, I have seen more doctors and undertaken more tests than I thought was possible, or even desirable in my life. The process was far from linear. The falls continued, all but the first one out of public eye.
I pursued some paths that led nowhere. I wondered at times whether I could find an answer; uncertainty was frustrating. I came to realize that medical care is more an art than a science in many instances.
The complex can be confounding, despite the best intent.
What I know is that I have a vestibular disorder that affects my balance and can create dizziness. The balance nerve, particularly in my left ear, is damaged; the right-ear nerve is in relatively good shape. The damage is irreparable. The cause is unknown. No medicinal cure or abatement is possible at this time. Vestibular physical therapy, something I’ve already undergone and will resume, is the only avenue currently available for coping with my condition.
I walk with a cane. It’s my security blanket, a third leg to offer stability and foreclose falls.
The good news is that a battery of tests—including a brain MRI, neck MRA (looking at the arteries to my brain), an MRI of my spine and extensive blood work have produced “unremarkable” results. That fact, particularly related to my brain, would surprise no one, especially family members. Simply, my overall medical condition is good—nothing “big or bad,” according to a Johns Hopkins Hospital neurologist who specializes in dizziness.
My wife and I feel confident in this excellent doctor; with whom we spoke for nearly 30 minutes by phone last week. He not only understood the physical attributes of my medical condition, but also empathized with the emotional component. The effect on my life is inescapable.
Friends and family have wondered how this disabling dysfunction happened. My first response is that it makes no difference now. Then, realizing that people want to learn from others facing medical challenges, I offer what doctors have said were possible causes: a virus or antibiotic or blood pressure medication. Simply, the cause is unclear.
What I have learned through this grueling process?
Support from friends and family has been heartwarming and critical to my state of mind. As I’ve experienced, vestibular disease promotes social withdrawal and hints of depression.
Though I applaud and appreciate the medical profession, I realized early on that self-advocacy and forthright communication were absolutely imperative. I can’t speak to whether the medical world is swamped at the moment—that is outside my knowledge base.
But I am adamant about the need to follow up continuously, sometimes annoyingly. I was persistent. I had to be.
And one other obvious conclusion voiced by many with whom I’ve spoken is that we are indeed fortunate to have access to Hopkins Hospital, one of the best in the world. Its panoply of medical specialists, operating in a world-class research institution, is awfully consoling when seeking a solution to a complex medical matter.
I have to accept my current reality with a positive attitude. I have to accept what is, not what was. I have to understand that many in our community—including the suffering folks whom I see when I visit Hopkins—have worse afflictions than mine.
I have to be empathetic as so many have been toward me.
I refuse to yield to self-pity, hard though that might be at times. I refuse to yield to anger, however easy that is.
I have to deal with loss. That’s difficult. We all lose parts of ourselves as we age. It’s unavoidable. Grieving is permissible.
So is optimism.
Columnist Howard Freedlander retired in 2011 as Deputy State Treasurer of the State of Maryland. Previously, he was the executive officer of the Maryland National Guard. He also served as community editor for Chesapeake Publishing, lastly at the Queen Anne’s Record-Observer. In retirement, Howard serves on the boards of several non-profits on the Eastern Shore, Annapolis and Philadelphia.