People who suffer with chronic illnesses are often accused of giving up or giving in. Irrational hyper-optimism has so infected the American psyche, that those who embrace their lives as they are often are looked down upon. Put mind over matter; never give in; be pro-active, always hope for a better tomorrow; these and other cheap clichés are often recited to the chronically ill, implying that their illnesses are somehow their own fault. If they would just take this drug, have this treatment, or see this doctor, then all would be well. An unwillingness to do these things is often viewed as laziness or giving in. Often, people take their own experiences and project them onto others, thinking that their outcomes would be the same for everyone if they would just follow the same course of treatment. People who think in this manner can often oppress and hurt chronic-illness sufferers, even when they don’t intend to do so. A recent health-related dust-up on social media has left me wondering if I should continue to write about my health problems and my battle with chronic pain. While I find writing about these things to be psychologically and physically helpful, sometimes the responses from readers can undo any of the health benefits gained from the writing.
I’ve repeatedly been told that I need to keep trying; that it is better to try and fail than not try at all. While I am sure people who say this to me mean well, I wonder if they have ever considered how such cheerleading can actually hurt those who are struggling just to make it to another day. I was diagnosed with Fibromyalgia 18 years ago. Since then, the laundry list of health problems I have has continued to grow. No matter how many doctors I see, how many tests I have, or how many different drugs I try, I still wake up every morning in pain. I know that there is no cure on the horizon. No magic potion is going to undo the damage done by two decades of fighting with the medical equivalent Mohammed Ali.
I have moments when I pretend that I can ignore my body and do what I want. Thanks to a decade of medical treatment, we are swimming in medical debt. Because of changes in our medical insurance, twenty-five to thirty percent of our income is spent on medical bills — mostly mine. I find it almost unbearable to watch Polly walk out the door every day, knowing that 25% of that day’s earnings will go towards my medical expenses.
Recently, I once again ignored reality and decided that I would get a job so I could help pay the medical bills. I need employment that will allow me to sit while I work and take frequent breaks. Showing up for an interview in a wheelchair or haltingly walking with a cane usually results in the interviewer telling me, thanks for applying. We will keep your application on file. So, as I did recently with an interview with Meijer, I pretended that I am not a cripple. And just like that they offered me a job. Would they have offered me the job if I was in a wheelchair or walk with a cane? I doubt it. I’m sure if I told them that I have arthritis of the spine and can only stand for 15 or so minutes at a time, they would have politely told me that they had no job for me. Yes, the law says employers must accommodate the handicapped, but in the real world a 60-year-old cripple has little chance of winning a job over a healthy 25-year-old. Discrimination against the handicapped and older prospective employees happens without employers ever saying a word. I try to remember back when I was young man responsible for hiring employees for the various companies I worked for. Young and able-bodied were always preferable to old and crippled. In the case of Meijer, they are so desperate for workers, that they were willing to hire a broken-down old man such as I. As my orientation day drew near, Polly and I had a heart-to-heart talk about whether I could really do this job. Mentally, I told myself, sure, I can do this. But, knowing that I can’t stand for longer than 15 minutes at a time means that it’s impossible for me to work the floor or run a cash register at Meijer. Polly, who knows better than anyone (including myself) what I can and can’t do finally persuaded me to not take the job. As is often the case when it comes to my health, she has a lot more sense than I do. I can deceive myself into thinking that I can do something, when Polly knows I can’t. This is not me giving up or giving in as much as it is accepting things as they are.
After turning down Meijer, I decided to try my hand at a work-from-home job with Amazon. I entered training with grand ambition, thinking that I had finally found something that I could do. Amazon’s training was quite extensive and grueling, yet I passed all the exams and was in the top five percent of my class of 650. Based on several conference calls with other new hires and management, I determined I was by far the oldest man in my group. Most of the new hires were in their twenties and thirties, as were many of the members of management.
Encouraged by Polly and my counselor, I continued to slog through the training even though I was worried about remembering everything I had learned. Both of them told me they were sure I could do the job. After completing the training, I was deemed a newly-minted customer service representative — ready to start taking live calls. I thought, I know I can do this. A part of me knew better, but all I could think of was our increasing debt, so I pushed my better judgment aside and answered my first call. The call started well — a man wanting to know why his order hadn’t been delivered — and then what I feared would happen, did. I couldn’t remember what I needed to do next. My mind literally froze — covered with a pain-laden, fatigued cloud. The customer became frustrated with me and hung up. After emotionally regrouping from my failure, I took another call only to have continued cognitive problems. I could not remember what I needed to do. This customer, instead of hanging up on me started screaming, so much so that I hung up on her. After this call, I mentally collapsed, knowing that I was unable to do what the job required. Several days later, Amazon and I agreed that it was best if I resigned, and so I did.
The Amazon catastrophe has caused great psychological damage and pain. Pushed to the very edge of the abyss, my thoughts turned to suicide. While the suicidal thoughts faded after a couple of days, the assault on my mind remains the same. It’s hard not to feel worthless, that I am little more than a burden on my wife and family. They will certainly tell me that I am not, but it’s hard not to think that I am. This is usually the point where well-meaning people interject one of their cheap clichés about making lemonade when life gives you lemons. I am always polite when people say one of their Oprah-like maxims, but there are days when I want to tell them, until you’ve walked in my shoes, shut the fuck up.
If you’ve noticed in recent months that the volume of my writing has diminished, now you know why. Things are better than they were a month ago, but I’m far from being ready to tackle another job opportunity. I do have thoughts of trying to make some money using my photography skills. In particular, I am considering starting a real estate photography business. Several of my children have recently bought homes, and the common denominator with all the homes they looked at was that the property photographs were terrible. I mean a-w-f-u-l. I plan to send out letters to local realtors offering to do their property photography. Several years ago, I applied for such a job with a local realtor only to be told by her that I was so overqualified that she didn’t believe I would keep the job for long. I tried to explain to her that she need not worry about that, but her mind was made up.
I hope this new business venture will prove to be viable and profitable. If it’s not, we will be forced to make some serious cuts in our budget. Hoping for a better day doesn’t change the fact that there are bills to pay. It used to be that it was easy to work out payment plans for medical debt, but now the physicians group my doctors are a part of will only make a payment arrangements for up to 12 months. After that, they demand you borrow the money to pay the debt. Last year, we had to borrow $5,000 to pay for my previous round of tests and procedures. While I’m not ready to throw in the towel, the daily pressure of these things makes it hard to focus on a better tomorrow. For those who have walked a similar path, you know what I’m talking about.
Oh Bruce, I hear you. I am in less pain than you, BUT after my surgery I am very weak…and it’s been 2 1/2 years. I could probably get a job in retail but don’t know if I could stand even 4 hours. I thought about the Amazon thing, but I didn’t want to do it for 60 hours weeks at the peak. Just thought it would be too painful and stressful.
You are more than your work ability. The man you are, your character, your words of encouragement on your blog, your desire to show truth about the IBF, the people you love who love you back, your friends…these things matter. I know you’ve helped me look at my beliefs and clarify what I really believe. Truth matters.
PS–you’re right, sometimes people who have issues who can function well don’t realize they aren’t as sick as you (or me). Sometimes they are worse than the uninformed.
I hope it works out with the realtors for you, Bruce. You take superb photos and they would only benefit from taking you on.
Meanwhile, continue to write just what the f**k you want – it’s your blog after all – and block detractors without a second thought.
No cheerleaders in Australia, over here it’s “that’s pretty fucked up mate, ya better come down to the pub for a beer. I got a good tip ( horse races ; Google Australian TAB we like to gamble while we drink) she’ll be right after that mate..”
As for the medical bills your post reminded me how lucky we are in Australia, here your hospital bill would be $0, your doctors bills would be covered mostly by Medicare https://www.humanservices.gov.au/customer/subjects/medicare-services, as would your medicine. We have an awesome health care system and sometimes we forget others aren’t so lucky.
Sorry to hear about your medical issues. Over here in UK your bills would be 0. It makes me realise how lucky we are. Your story shows that for every lazy slacker who lives off the system there are hard working, decent individuals like yourself that would suffer should the national health system be taken away.
I can’t believe right wing Americans would oppose Obama care but yet be happy to send their hard earned dollars tax free to religious institutions and fuckers like Kenneth Copeland or Joyce Mayer who have money to burn.
I think it’s outrageous that in a modern, western, supposedly civilised country, decent medical care can bankrupt you. In the UK you’d have been treated totally free of charge, paying only a nominal sum for prescribed drugs. Americans who complain about Obamacare should realise that free, or at least subsidised, medical care is a basic human right, but most seem content to scream blue murder if gun control is mentioned, whilst shouting ‘big government’ when it comes to medicare.
The irony is that the US actually has many of the world’s finest doctors and medical research teams.
I agree with Geoff. Your treatment would be free in Canada as well.
I’m sorry about all of your health problems.
sorry about your pain and health problems, and about the buffoons that trivialize it. perhaps make a password for health posts on your blog, or a separate friend group on facebook, to stop the trolls? i’d guess you already know the people that are supportive in their comments, and let them read those posts and the heck with everyone else.
No one knows what it’s like to walk in someone else’s shoes. You can’t feel the other person’s body or mind, nor really understand their circumstances. People who think they can often become pretty judgemental quite quickly. I’m sorry you have to deal with all that on top of everything else.
Post away. It’s good for your mental health to share what you are going through.
I injured my shoulder and elbow almost 6 weeks ago. The first 4 weeks I was In almost unbearable pain. A lot of people made fun of me and told me I was being a pussy. The pain was so bad I took a day off of work and took some of the hydeocodone from a previous surgery. They had no idea.
That is just a little taste of what you live with, Bruce. No one but you knows what you have to deal with each day. I’m happy to read what you have to say. I’m glad you continue to write and share.
Good luck with the photography. You take amazing pictures.
I’m sorry, Bruce. All of it sucks.
I can’t speak for Polly, but I wanted to tell you that until I had to quit my job in August, health insurance for my entire family came out of my paychecks. I ended up bringing home a ridiculously low amount of pay, but we had decent health insurance.
I didn’t see it as half my money going away… I was proud that I was able to provide that.
Now we’re on an obamacare plan. One more reason to hate that stupid buffalo I was working for. 🙂
I hope the photography thing works out for you. You have a great eye and compose lovely photos. Ever consider photographing babies? Big business right now, you go to them and do the whole newborn photo shoot thing.
Hope you start feeling a little better at least.
And seriously, it’s okay to tell people to fuck off. Some of them really deserve it.
Have you tried to get Social Security Disability (www.ssa.gov)? If you qualify, your medical bills might be paid, especially if you qualify for SSI. You and others have paid into the system, so take advantage of it, when it is necessary.
SSDI and SSI- I applied 7 years ago and my claim was rejected. The majority of Fibromyalgia related claims are denied. My doctor was incensed over the claim rejection, but little can be done.
Today? I no longer qualify for SSDI. Thanks to following Jesus and opting out of social security as a pastor, I no longer have enough work quarters to qualify. 3 years to go and then I can start receiving regular Social Security.
As far as SSI is concerned, now that all our children are out of the home, Polly makes to much money for me to qualify.
My life is a perfect example of decisions made when young can cause great harm when you are old.
My life is a perfect example of decisions made when young can cause great harm when you are old.
Yeah, you might say, but it is also a good example of how messed up your America is now. Why is it that the national anthem glorifies bombs bursting in air while not free meds for all and free school too? Why hasn’t USA done either while many other countries do? Because the USA is messed up in its priorities and bleeds its own to maintain profits.
God has indeed blessed America, as I see it. How else could you be facing an election like the one in a few days?
Thank-you, Bruce, for what you accomplish here. I will continue to support you as long as I am able to do so. Your voice is a most important one these days…
So sorry that you have such health problems – and I too wish I had a magic carpet to bring you to the UK (or any place with free healthcare). A word of advice to those folk who are sure that by one throwaway sentence, they can effect a cure for all your problems…don’t do it Friend diagnosed with cancer was NOT prepared for all the ‘power of positive thinking’ advice. She was told ‘Oh my aunt/gran/friend/colleague had that and soon after treatment was running a marathon for charity/climbing Mt Kilimanjaro/trekking in Nepal. The worst was ‘My uncle recovered from kidney cancer and learned fire-eating and does shows for cancer charities now.’ Friend wanted to say, ‘OK, good success stories, but tell me how many you know who didn’t survive this, we all know people who died of cancer. Please please keep writing Mr Gerencser, it means so much to many of us and personally, life would be much less rich without your blog.
I’m, like you, nearly 60. I, like you, walk with a cane and can’t handle standing for long periods. I, like you, fell guilty seeing my husband working after he planned to retire. I, like you am looking at ways to bring in money.
I’m in sort of the same boat, not really able to work full-time anymore, and my retirement-age husband continuing to work, principally to keep me on his health-insurance. I can freelance, and bring in money, but most design firms that hire and offer benefits want a younger person. I just had a surreal interview with an internet company, and I was surly the oldest person to ever darken their door by at least 25 years. I felt like a storyboard for “The Intern.”
I’m also tired of “cheery” people telling me to keep trying. I will, of course, but sometimes I just need to be told that it’s OK to be down in the dumps.