On a recent annual visit to the radiation oncologist who treated me for cancer nearly 20 years ago, I was asked to fill out a form prior to examination. The answers enable the doctor to best assess a patient’s cancer treatment side effects and post-cancer quality of life status.
To certain questions I circled yes. I suffer from fatigue, joint and muscle pain, headaches, and dizziness. In parenthesis I wrote (vestibular disorder), indicating the symptoms were not a result of m previous cancer.
Upon entering the exam room the doctor immediately spoke to me in the comforting tone I had grown accustomed to during my cancer treatment and further cancer scares over the years. “I am so sorry to hear about your vestibular problems. That is such a debilitating disorder.”
This is a man who sees breast cancer patients all day long – some on the brink of death – and yet he understands what I am living with now that I have a vestibular disorder, I thought. Eternally grateful for his wonderful “bedside manner” and excellent cancer care over the years, I also appreciated his empathy for this invisible chronic illness.
I am among the fortunate to have health care professionals who understand the effects of living with a vestibular disorder. They are kinder to me than I sometimes am to myself. I find it difficult to fathom that I am not the same vibrant, active person I once was.
Two years ago, a month after my 60th birthday, I was hospitalized with extreme vertigo and nausea – so severe that I couldn’t walk 5 steps to a telephone for help. Diagnosed with labyrinthitis/neuritis from a virus that damaged the nerve in my inner ear, hospital neurologists assured me I’d fully recuperate and be back to normal.
The extreme vertigo and nausea dissipated to be replaced by complete imbalance, cognitive difficulties, severe fatigue, and neck pain, making it almost impossible to turn my head, and excruciating headaches. A vestibular disorder diagnosis did not come until four months later. In the meantime, I thought I was dying, going crazy, or had burned out. I was practically nonfunctional. I continued to go to work but assumed I would soon be fired from my job as a writer, used to churning out business plans, proposals, abstracts, I could not write a simple letter. I could not do Xeroxing. I could not follow what was going on in a meeting much less run one – part of my job description.
Mu fatigue was so out of wack that putting one foot in front of another was for me like climbing Mt. Everest. What was all the media rage about age – 60 is the new 40? My new 60 was an ancient hobbled 90-year old.
A gregarious, social person, I needed to spend a lot of time alone. I still do. Interacting with even two or three people is exhausting. It’s not easy getting used to the new me.
Despite the hospital neurologists’ assurances of 100% recovery, I had to leave my job two and a half months after being hospitalized.
After a few months on medical leave, it was clear that I would not be able to return to work. With the help of the human resource department and my supervisor, I applied for long-term disability insurance through the private insurance company that I was obliged to pay into through my employer. That company required me to apply for social security disability. I was denied disability compensation by both.
From the explanations in the denials it was evident that neither the private insurance company nor social security workers fully comprehended what a vestibular disorder was.
Granted, it is not easy to understand. My family and friends try to accept the new me, but from things they say I know they don’t get the ramifications of a vestibular disorder. But how would anyone really understand how tiring, exasperating and disconcerting it is to go through the day seeing every object in a moving state? Whether a large house or a small street sign, nothing stands still for my ‘post-vestibular brain.’ It’s like being in an amusement park fun house with the floors tilting and moving, mirrors distorting everything, but believe me it is NOT FUN.
“Your brain can’t filter stimuli as it did before,” said the physical therapist who worked with me for one and a half years to teach me to stabilize my gaze and to stay balanced enough to walk without holding on.
“It’s as if you were in a room with 6 heavy metal bands playing at once. Imagine your brain trying to work with that going on,” she added.
After a year of simple exercises – trying to stabilize an X pinned to a white wall while slowly moving my head back and forth, up and down, I graduated to advanced exercises. At home my exercises consist of walking down the street looking from side to side without falling, walking up and down a few aisles at the supermarket without holding on to the cart, and practicing one foot in front of the other walking as if preparing to pass a police Breathalyzer test. Afterwards I collapse on the couch.
I needed to hire a lawyer for help with the disability insurance issue. Finally, after a year and a half of working with an excellent lawyer I was awarded long-term disability insurance from the private company and more recently from social security after an appeal that required a hearing before a judge.
The debilitating effects of this disorder are not easy to explain, even to friends who want to understand.
A west coast friend jovially invited me to join her with three other girlfriends for a “touristy scavenger hunt” held in San Francisco’s Chinatown on the night of Chinese New Year. Yeah, right! Does she realize that I can barely stay on my feet in a minimally crowded, not very noisy setting?
It’s a real stretch for me to be in places my physical therapist calls “complex environments” – normal, everyday places for most anyone else. I push myself. After a Red Sox baseball game I was so dizzy and totally disoriented that after leaving Fenway Park I had absolutely no idea where my friend’s car was parked. I have lived in Boston nearly 40 years.
Another friend asked me to join a group to go dancing. I could no longer sit in a room with loud dance music, watching couples whirling around on the dance floor, than dance myself. I’d definitely be in the bathroom getting sick.
Again, my doctors understand when my friends, family and I don’t. “Doctor, I can’t believe that I used to go dancing when I was on chemo and now I can hardly walk around much less dance.” My primary care physician repeated what my oncologist told me with similar, caring words.
Today I spent a lot of time on the couch. Resting is a necessity if I expect to function in what is my new vestibular normal. People say I look good. Who wouldn’t after spending so much time resting?
Having a vestibular disorder takes a toll. It has impacted my career, social life, travel, hobbies and simple pleasures like going to a ballgame or to a club to hear music or dance. My fatigue prevents day trips to beautiful spots in New England that I once enjoyed. The meditative and relaxing pastime as a self-taught painting and collage artist has had to take a back burner. The dizziness, faulty concentration and fatigue were too much. But the physical therapist has encouraged me to get back to it – working on sitting down, on much smaller pieces, in shorter increments of time.
My heart goes out to other people in my vestibular support group, particularly the younger people who are launching careers, raising children, or trying to socialize and meet a life partner while coping with their vestibular disorder. Thank goodness my sons are grown. My 22-year old lovingly calls me “stumbalina” a I stagger around the house, but he and his brother help me tremendously even the 26-year old – a cop on the NYPD – vacuums when he frequently comes home during his two days off each week.
Most days I don’t feel very well, but I try to keep going, try not to get down. A friend in New York City gave me the best piece of advice, “Try to keep your spirits up.”
Sometimes it is not easy.
I am a long term cancer survivor and am supremely grateful for my life.
Today I am working on being a vestibular disorder survivor. It may not be life threatening, but this damn disorder can sure kill your spirit if you let it.
Update (March 2014)
I have post-concussive syndrome (even though I don’t play for the NFL!), arthritis in my neck (probably as a result of a car wreck in 1986), and migraines, which started in the early 90’s, I assume the result of chemo, since I never hardly had a regular headache prior to that. That is the reason they give for my labyrinthitis not being “cured.”
I have to treat myself as a delicate hothouse flower – an orchid or something – in order to function at even my compromised level. Enough sleep and resting is mandatory and I cannot multi-task at all. I can’t even talk on the phone while preparing the dog’s breakfast, which is not rocket science nor a meal at the Ritz!
Weather changes really knock me for a loop – I feel as if I’m one with the universe, which isn’t a good thing.
I had to do PT with another therapist who specializes in neck and back before I could even work with my main PT because I could not even more my neck initially from holding it so stiff as to not fall down. But since that time I have had to go back to PT for tune ups and also vision PT at one time.
I have had set backs from other health issues I mentioned that I had another breast cancer in 2008. I also had lung surgery and have some kind of lung disease, which, thank God, is dormant now. And as I mentioned I had a weird heart attack called a Takotsubo heart attack in 2012. So between surgeries and treatments, everything has impacted my vestibular disorder.
An addendum to my story: I have had my radiation oncologist and oncologist for 27 years sinve my first bout of breast cancer in 1987. This second time around, in 2008, my oncologist agonized whether she should recommend me for chemo, and consulted 2 other oncologists about my case. She said my quality of life was so compromised due to the vestibular disorder she literally agonized over the chemo issue. She opted not to put me on chemo for that reason.