Vol 115: One wish
In his popular motivational speeches, best-selling author and self-help guru Tony Robbins often says that ‘a healthy person has a thousand wishes but a sick person has only one’. And as simple as it may at first appear, there’s a reason why the business strategist and NY Times favourite repeats it. It’s the same reason why those who hear or read it, listen. Its bold, harsh reality leads to a truth so raw that denial is impossible and the normal reaction is a hollow emptiness. The more it resonates, the more powerful it becomes. I still remember the first time I ever heard Tony Robbins say it and the resounding bullet hole it soon bore.
I didn’t know then why it meant so much to Robbins, but I suspect it hit me like it did because I’d known too many patients who felt the same and would give (or have given) absolutely anything to be healthy again. Since medical ailments often sit at the ethos of life’s greatest challenges others will likely agree. Growing old, as most who have done so know all too well, is not for the feint of heart. Then again neither is being human. Life is complicated, puzzling at best, and fraught with fear when the unknown lands at your doorstep, an unknown like being afflicted with a condition that’s relatively unheard of.
There are many lesser-known medical disorders and unlike the common diseases like cancer, heart disease and Diabetes, they do not arouse the same public empathy. Even those closest to the patient, do not relate, leaving the patient to suffer in silence and without the compassion and support of their surrounding community. Today’s report lifts the veil on one such condition.
Have you ever heard of Acromegaly? My patient, hereafter referred to as Hannah, certainly didn’t and she never imagined that she’d be diagnosed with something so pervasive that it would change her life forever.
Hannah was born in the early 70s when high waisted jeans, bell sleeves and platform shoes were all the rage. Disco was nearing its peak and black families gathered religiously every week to watch television shows like The Jeffersons. Hannah smiles when talking about her childhood. She was raised by a village of loving aunts and uncles and she describes that time in her life as blessed. She vividly recalls going to the beach often with her brother and travelling to Abaco with her cousins to visit her maternal grandmother’s family at every given opportunity.
After high school, she leaned toward a career in hotel management. Unfortunately, job opportunities in this market were scarce so she supplemented her income by assisting her aunt with selling lunches. This is where she met her husband. She later took on a management position with a wholesale jewelry company and began working closely with straw vendors and a number of aspiring craft entrepreneurs.
Her passion for jewelry and dressing people for elegant events eventually led to running her own jewelry business which would not have been possible without the support of her husband. They dated for six years before getting married and this year they will celebrate their 22nd wedding anniversary.
Hannah had her first daughter at the age of 30. Not long after, she was diagnosed with Polycystic Ovary Syndrome (PCOS), a condition where cysts develop along the outer edge of the ovary and can cause complications like infertility, miscarriage or premature birth, Diabetes and endometrial cancer. Those complications were mitigated by taking medication and Hannah had two other daughters without issue. At that point, as her time became more strained by family responsibilities in addition to managing her own medical care, she gave up her business and went full time into the hospitality industry.
In 2020, however, her life was upended when she was looking at old pictures on Facebook and barely recognized herself. The person staring back at her in the mirror and the person in the pictures were not the same. Hannah was frightened by how much her features had changed and with no conscious realization as to when or why those changes occurred. Her nose was visibly more enlarged, there was notable gapping between her teeth, her tongue looked swollen, her lips fuller and both her forehead and lower jaw had increased in size.
When asked if she’d had any medical issues prior to that she indicated that the only things she can recall was that her body often itched all over and her hand sometimes felt so stiff that there were times when she couldn’t get it to move. Getting into bed, for example, was a challenge. She also found it more difficult to multi-task at work but the symptoms were so transient that she simply attributed it to her high-pressured job. She eventually told a close friend who advised her to see a doctor but the pandemic started and Hannah was diagnosed with Covid-19 in March 2020, just days after the lockdown was announced in The Bahamas.
Even after she gradually recovered from Covid-19, Hannah’s symptoms intensified. At first, she said she didn’t look or feel like herself. Then she began to notice swelling in her hands and feet. She had recurring headaches and pain in her hand and wrist. She also felt weak and more tired than normal. Hannah knew she couldn’t delay things any longer and tele-visited Dr. Omala Ablack, a renowned local internal medicine physician who immediately diagnosed her with Acromegaly – a relatively rare condition where the body makes too much growth hormone. The main cause is from an adenoma (pituitary tumor) which in Hanah’s case was later confirmed via blood work and an MRI.
The news shocked her. Looking back, hearing it felt like waves rolling through her stomach and chest then to her brain and crashing back down to her feet. She became emotional telling her husband and, for the both of them, the uncertainty heightened their dismay.
From there, Hannah was referred to an endocrinologist, Dr. Ariane Davis-Simmons, who still monitors her condition. Dr. Davis-Simmons then referred Hannah to a specialist in the US who could surgically remove her tumor, which was fortunately benign. Hannah’s tumor was excised in September 2020 without issue. The surgery cost $75,000 so having dual insurance coverage offered through her and her spouse’s job attenuated her concerns.
Hannah couldn’t see her husband for the four days she was in the hospital but was able to recover with him at a friend’s house in the US. Touching her heart, she summarizes this part of her life as the ‘I will make a way chapter’ in reference to Isaiah 43:19. Hannah says this was the most amazing part of this entire ordeal. They had nowhere to stay in the US but a customer at her husband’s job at the last moment offered his home to them. In an act of incredible kindness that she will never forget, they transported them to appointments, cooked them three meals a day and housed them for three weeks.
Despite the success of her surgery, Hannah requires lifelong treatment. She has to have routine blood work and an MRI performed every two years. She takes oral medication daily and gets an injection once a month to regulate her hormone levels. Each injection costs $3,600. She walks regularly for exercise now and consumes a better diet but the uncertainty of life remains ever present. Both her heart and brain are enlarged because of this condition and there is no medication or surgery that can reverse that.
The actor Paul Benedict who was best known for his role in The Jeffersons playing the English neighbor Mr. Bentley died from a brain hemorrhage in 2008. He was diagnosed with acromegaly in his mid-twenties. Tony Robbins was diagnosed with acromegaly at the age of 31.
With her daughters now grown and tears long dried, Hannah is focused on forming a support group in The Bahamas for other acromegaly patients. During the height of her medical trials, she never told her family what was happening because she didn’t want to be a burden but, in retrospect, she realizes how much it would have helped having a community of people sharing the same experience as her, much like the village that supported her growing up.
When Hannah was asked what her one wish was, she replied that every test is a testimony and if she can help others during their tough times then her survival will not be in vain. She’s created an email for anyone with acromegaly who’d like to contact her:
(readyforthenext2020@gmail.com)
and she’ll pioneer this new frontier like she has before, with her husband, kids, family and friends by her side. She doesn’t have to wish for anyone to care for her because that wish already came true and she couldn’t be more grateful.
This is The KDK Report.
