Hello, and welcome to the second Saturday in July. You may have noticed that I didn’t make a post last weekend, but I have a very good excuse. I was in the hospital.
July is Disability Pride Month, and I had partially written a post about disability and independence since the first Saturday was also July 4th, Independence Day. Then I found myself dependent on the goodwill of hospital staff on that day, so all that went out the window.
I must admit that this was the nicest hospital stay I’ve ever experienced. I went to the Emergency room of my original transplant hospital on Saturday morning. Friday night, I experienced a very long run of arrythmia – off and on from before dinner on Friday until around 3:00 on Saturday morning. I slept very little as the sensation of my heart running a marathon while I lay in bed made it impossible to fall asleep.
Saturday morning, I woke up short of breath and fatigued. This was exacerbated by the fact that our electricity went out around 7:00 on Friday night due to a storm. It remained out until late afternoon on Tuesday, nearly four days.
It was hot and humid and that didn’t help my breathing. By the time I woke up around 7:00 on Saturday, I realized that I needed to go to the ER. Even in the meat locker coldness of the ER, I was gasping for air when I talked too much.
They admitted me to the Pavillion, the newest portion of the hospital. When I had my first transplant in 2006, that piece of property was an open field. The cardiac unit is on the top floor – the “penthouse” they called it - and the view was spectacular. It was the 4th of July, and I was able to watch multiple fireworks displays in the distance from the large window in my room.
The room was brand new, and it was appointed like a fairly nice hotel room. The hospital changed their food service to an on-demand model, and I could call the kitchen and order room service off the menu whenever I was hungry instead of being bound by the scheduled delivery of a pre-determined meal. Most of the items I tried were pretty good for hospital food.
This was a far cry from my months-long stays in 2004 and 2005 when I was in the old building and learned to play a game fit for Food Network where I ordered items from the paper menu with check marks then assembled the ingredients into my own creation. Order two hard-boiled eggs, two pieces of toast, one each mustard, mayo, and relish packets, and you can create your own egg salad sandwich. (Follow me for more recipe tips.)
The best part of the whole visit was learning that my heart is still in good shape. My symptoms are likely electrical in nature and should be cured with an outpatient ablation procedure. That was the best possible outcome. I have too much I want to do before this heart decides to resign from her position.
Last July, I wrote a post about the Disability Pride Flag and its origins. You can read the full post below:
July is Disability Pride Month
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July 14, 2025
July is Disability Pride Month! This year’s theme is “We Belong Here, and We’re Here to Stay.” This theme comes from The Arc’s National Council of Self-Advocates. It delivers a powerful message—peopl…
After this hospital stay, it made me rethink what I had already written on attempting to be independent when you have a disability, and how the system is not designed to provide much in the way of support. It’s just the opposite. No matter how hard you try to be independent, it seems that others will try to make it harder for you.
This recent hospital trip was the first time I’ve spent more than one night inside the hospital since 2019. That’s not a bad stretch. Seven years without doing time on the inside is a pretty good run for a transplant patient. I never accomplished such a feat with my first heart transplant.
Looking back, I realize that I was hospitalized almost every year, at least once. Early on with that heart transplant, I went back to work, and my coworkers were not aware, or did not care, that I was immunocompromised. They would come to work sick and never cover their mouths, or cough into their hands, then touch the photocopier, the coffee pot, the door handles, etc. Many times I was hospitalized with an upper respiratory infection or pneumonia due to the endemic infection that circulated in the office.
Although I was eager to return to full-time employment and not label myself as disabled, my employer and coworkers were not as eager to help me to achieve that goal. Eventually I was fired for missing too much time when I got sick. I probably could have filed for FMLA, but they were a small employer and did what they could to create a hostile work environment. So much so that I was actually relieved when I was let go.
One of the ridiculous things I recall was when the Swine Flu was circulating. There was a vaccine clinic not far from the office, and I could get a 2:00 appointment. I asked to take an hour off to go to the clinic, and I was denied. When I pointed out that this hour could prevent several days of missed work, I was told that it was unnecessary and I had already used up all of my personal time for other medical appointments. In those days, I never took vacations. Any PTO was used for medical reasons. Mind you, I was a salaried employee and worked in excess of forty hours per week more often than not, without compensation for those hours or credit toward PTO. It would have made sense for them to allow me the time off to get that vaccine, which I eventually did after work the following week, to avoid another hospitalization.
Due to my annual hospital stays, the cost of providing health insurance to all of the employees in the office increased dramatically. Management passed along a portion by increasing the employee contribution to this cost. When my coworkers complained about the increase, the owner made sure to let them know that this cost increase was explicitly my fault. It would be an understatement to say that everyone in the office despised me after this.
After this dismissal, I looked for work but couldn’t find much. I was very skilled in my industry and possessed over twenty years of experience, but it is a small and rather inbred industry in my state, and everyone knew who I was.
Potential employers wanted my ability but not my disability.
This dichotomy led me to accept a role as a “contract worker” with another small company that offered me slightly more than half of what I had been making in a job that didn’t come with benefits. They didn’t want to be on the hook for my healthcare costs, but they were willing to be flexible with my hours. I could miss as much time as needed for my health, so long as things got done.
Shortly after I took the job, the owner of the company felt comfortable leaving things in my hands and headed to Florida for the winter. During the nine months I was there, I revamped some of their operations and streamlined their processes, all the while continuing my job hunt.
Eventually I landed a job with a Fortune 500 company at triple the pay and excellent benefits. You can bet I jumped on that offer with both feet. I loved that job. It was demanding but meaningful, and I still miss it. I managed to work there for five years until my heart went into failure and I needed to move to Tennessee for my second heart transplant.
My corporate career ended with that transplant. Shortly after my recovery period came to an end, the pandemic shut down the world. Between covid restrictions and my own ongoing complications, it was not possible for me to return to the grind. I’ve been unemployed for nine years now, and I will turn sixty years old next year. Neither one of those statistics makes me a brilliant job candidate in a competitive field, and that’s before you add in my health issues.
As the economy worsens and it becomes more difficult for able-bodied individuals to survive, it has become exponentially more difficult for people with disabilities to remain independent. I am fortunate to have completed a few decades of gainful employment before I became fully disabled, and I am also fortunate to be married to my husband. Without those two things, I would not be able to live independently today.
As you celebrate your independence today (last week, but you get it) take a moment to consider those who may have no choice but to remain dependent on others through no fault of their own. Nobody wants that, but it’s not a choice. Anyone – even you – can become disabled through no fault of their own. Some people are born with defective genes, like me, while others may acquire an illness or become the victim of an accident.
It only makes sense to create a safety net to catch those who fall because everyone falls eventually if they live long enough. We are all interdependent on each other whether we believe it or not.
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