Regular readers know that I battle chronic illness and unrelenting pain from the moment I get up until the time I fitfully fall asleep in the wee hours of the morning. For those of you who are new readers, let me give you the short version of my medical resume:
I have Fibromyalgia, which causes pervasive fatigue and muscle pain. I also have nerve pain in my face, hands, and thighs, loss of motor function and strength, osteoarthritis in every joint, including my back, frequent loss of bladder control, diabetes, and high blood pressure. Since late last year I’ve gone through numerous tests in an attempt to figure out why I am losing weight and frequently don’t feel like eating. An endoscopic ultrasound found a lesion on my pancreas and enlarged lymph glands. So far, they have not turned cancerous. I’ve been treated twice this year for squamous cell carcinoma (hip and lip) and several years ago I had a basal cell carcinoma removed from my nose. I have a labrum tear in my right shoulder and joint damage in my left shoulder, feet, and knees. I require the use of a wheelchair and/or a cane to get around.
This is my life. There’s little I can do to change it. I hunker down and try to live the best way I know how. It’s been a decade since I’ve had what I call a good day. These days, a good day is one where the pain is manageable and I can work in the office for a few hours and maybe go to a football game with my sons. A bad day is one where narcotic pain medications do little to ameliorate my pain and I am left curled up in bed wishing I were dead. Depression is the dark passenger in my life, and there are times when I fight the desire to end the suffering and pain.
I know there is no cure on the horizon, no magical drug that will make everything better. I’ve been tested, retested, and tested again, so much so that I glow in the dark. I have blood work at least six times a year. My last blood draw required seven vials of blood, and that was after the phlebotomist stuck me three times trying to find one of my deep veins that would give enough flow to fill seven tubes. Despite all these tests, I remain, to some degree, an enigma to doctors, a patient with symptoms that don’t neatly fit into a specific diagnosis box.
As a skeptic, atheist, and humanist, I accept that life is what it is. I know that a deity isn’t going to magically heal me, and I’ve concluded neither are doctors. I have two choices in life; either endure whatever life bring my way or roll over and die. So far, I’ve chosen to endure, Yes, I hope for better days and I certainly desire for the good days to outnumber the bad days. But, regardless of my thoughts and desires, the die of my life is cast. In eighteen months I’ll be 60 years old. I’ve lived a decade longer than my father, who died of a stroke at age 49, and five years longer than my mother, who killed herself 23 years ago. I’ve watched death rob me of those I love, and I have little doubt that death is lurking in the shadow of my life, ready to claim me for its own. Death, like life, is certain, and as anyone who is chronically ill can tell you, the prospect of death is an ever-present reality.
Yet, I can have delusional moments where I pretend I’m not sick. There are times I become quite depressed as Polly goes off to work each day. As a man who was taught that the husband is supposed to be the breadwinner, I find it emotionally and mentally painful to watch the most important person in my life go to work every day so we can have a roof over our head, food to eat, and all the trappings of a typical Midwestern lifestyle. I tell myself that Polly was a stay-at-home mom for many years and now our roles are reversed, but I still wish I could be the one kissing my spouse goodbye and saying I love you as I walk out the door for work. I know this will never be the case, but I can, at times, trick myself into believing that I can once again be Bruce Before Illness and Pain.
The chronically ill are known for convincing themselves that things are not as they seem. Put mind over matter, well-wishers tell the sick person. I’ve tried just such an approach many times over the years. Sickness be gone, pain depart, I say to myself. I can do anything I want to do. The only thing standing my way is me! Try as I might to convince myself that a wonderful new day has dawned, it’s not long before reality slaps me up the side of the head and asserts its rule over my life.
I continue to scan the help wanted ads, looking for the perfect job for a broken down, incapacitated old man. Every once in awhile, I’ll apply for this or that job, thinking that the prospective employer will be sure to call. Rarely does the phone ring. Recently, I applied for a job that required 2-5 hours every other week stocking display counters at the local Meijer. I sent the company my resume, and a week or so later they contacted me for an interview. On the day of my interview, I made sure I looked my best, donning a crisply pressed shirt and dockers. Not wanting to give off the cripple vibe, I left my cane at home and uprightly walked into Meijer for the interview. I was sure that this was the perfect job for me. Just enough work to restore a bit of my self-esteem and provide added income for our household budget.
The interview went well. I generally interview well. Having hired hundreds of people in my day, I know what an interviewer is looking for. I was pleasant, made eye contact, and asked the interviewer questions about herself, the company, and the job. She seemed to be excited about the prospect of hiring someone like me. Or perhaps, I just thought she was excited. Regardless, I left the interview thinking I would soon be stocking batteries at the local Meijer. A few days later I learned the company chose someone else for the job.
Not being chosen for an inconsequential, low paying job resulted in a weeks of depression and thoughts of suicide. Try as she might, Polly couldn’t rescue me and all my counselor could do was keep me holding on to the proverbial knot at the end of life’s rope. In time, the dark clouds lifted and I was able to put the rejection behind me.
I can convince myself that I can still work like I did before 1997, the year I was diagnosed with Fibromyalgia. I’ll convince myself that I can stand on my feet for hours at a time, even though I can rarely stand for more than an hour. Just shopping for groceries requires me leaning on a shopping cart, and by the time I leave the store my body is screaming in pain.
My body never lies, but I do. I lie to myself, and I often lie to Polly. I’ll tell Polly that I want to apply for a job at this or that store and she’ll give that look I’ve see uncounted times before. But I can do it, I tell her. I won’t know until I try, right? The love of my life lets me drift on the sea of my delusion, knowing that I will sooner or later realize I can’t do what the job requires me to do. She never looks down on me or chides me for trying the impossible. She knows, based on almost 40 years of loving me, that I am a proud man, a man who has a hard time embracing his life as it now is.
Sometimes, I will inflict greater pain on myself, refusing to give in to what my body demands of me. Last Friday, my sons and I attended a local high school football game. The night before I got about 4 hours of sleep, and wisdom dictated that I cancel my plans to go to the game. So much for wisdom. I went to the game and endured three hours of being battered by people walking up and down the aisle. A man in back of me, thinking he still was in high school, spent the night cheering loudly and stomping his feet. Every time he stomped his feet my body rippled with painful shock waves. By the time the last touchdown was scored, I was ready to murder the man where he stood.
After the game was over, I haltingly made my way down to the ground. This particular school decided to build its football stadium a long distance from the parking lot, and I wondered if I was going to be able to make it back to the car. With head down, teeth gritted, I walked toward the car. My sons, still in their prime, quickly, even with grandchildren in tow, outdistanced me, and soon they were yards ahead of me. They stopped, allowing me to catch up, only to find me straggling behind a few minutes later.
During the game, we had been talking about Polly’s parents, her Dad’s upcoming hip replacement, and their unwillingness to change their way of life. Pride was their problem, we decided. As I walked towards the car, a woman in a golf cart stopped and asked if I would like a ride to the car. Everything in my being said YES, but pride turned her offer of help away with a, no, I’m fine. Thank you. A few minutes later another woman in a golf cart stopped and again asked if I needed a ride. I gave her the same answer I gave the first good Samaritan. My oldest son, watching my obstinate denial of reality, laughed and reminded me of my own pride. I chuckled, and then continued on my way to the car.
My son,of course, was right. It’s pride, the desire to rise above my illness and pain, that often brings more pain and debility. Try as I might to see my life as it is and embrace my new reality, I continue to have times when I attempt to conjure up the Bruce that existed before illness and pain took from me much of what made me a man. I look at old photographs and weep, lamenting a life that once was. And then I dry my eyes and remind myself that nothing I do can bring back that which is lost. The best I can do is embrace life as it is. I have a beautiful wife, six wonderful children, and ten awesome grandchildren. Surely, I’m blessed with that which many people would give anything for, I remind myself. I can choose to lament what’s been lost or rejoice over what I still have.
Today, I rejoice. Now, where’s the employment section of the paper?
[signoff]
I don’t think I have the right words to say but I appreciate you and am so glad to know you. You mean a great deal to me even though we’ve never met in person. I’m all choked up after reading that. You have a gift with words and your authenticity and honesty inspire me. I hope you have more good moments than bad.
Thanks, Jerri.
Sad to know how much you suffer in the everyday, Bruce. Nevermind that your health keeps you from the daily workaday life. I go out to work and so does my wife and she earns more than I do, so imagine your horror at having to face THAT in your life. ;-0
Thank-you for saying it, and I continue to wish you peace and relief. Chronic pain is so terribly debilitating. How far are you away from the areas that now sell marijuana legally? You might consider giving that a try because I have heard many people have found pain relief this way. (and they do not spend their days stoned out of their gourds)
I plan to be a smoker if and when it is legal in Ohio. We vote tomorrow on Issue 3 that would legalize the sale, use, and growing of marijuana. The latest poll says it has a 50-50 chance of passing. There are some political issues attached to Issue 3 that trouble me, but I intend to vote yes. Issue 2 is also on the ballot. This issue is meant to invalidate Issue 3 or tie it up in court.
So…come tomorrow night….we’ll see if Ohio joins other progressive states in approving marijuana.
I have allergies, asthma and COPD. I’ve always said I’d never smoke marijuana. That’s I’d cough up a lung if I smoked. The thing is, as time has gone on and I’m coughing up a lung anyway, why not smoke? I’d rather eat brownies but there are days, crap I’d smoke if I cold just get some relief. Our new Prime Minister campaigned on legalizing marijuana. Time will tell.
BTW, I’m a liar too. 😉 <3 What are we suppose to do. If anyone asks us how we are and we tell them they'd regret asking. I'm a good denier too. Helped Biker Dude rake my in-laws leaves yesterday. Honestly, I didn't know how I'd rake with every stroke. I thought to myself, I can't do this I'm going to have to stop. But I didn't. Boy is my body aching today. I think when it comes to chronic pain, lying and denying is a coping mechanism that helps us get through another day. And if that's the case, maybe it is a good thing.
Hi Zoe, I voted strategically to end the rule of Harper the Bad. Will be waiting for the long slow hatred at the new PM to begin awhile after he hits office. The National Commission to investigate the disappearance of indigenous women, the legalization of cannibas, the deficit going up; all that will necessarily haunt the poor fellow but I will shout for him as long as my voice lasts.
Take good care of your aching body. I know so many people who have chronic pain to bear. It ain’t right. Can you get decent cannabis to assist you in your discomfort? Have you found it helpful?
Well I’d like to say I voted strategically and technically I did but I would have voted Liberal anyway. Still have concerns but it wouldn’t matter who is in government, I’m concerned. I’d like us out of Syria that’s for sure. Anyway, I don’t even have a doctor Brian. My doc, 10 years my senior retired unexpectedly and now I can’t find a doctor who will take me or any patient. I’m now a statistic. Baby Boomer without a doc. None of the clinics here are taking patients and some you can’t get on a waiting list. Others don’t have a waiting list. I don’t want to travel for my doc so I’m biting the bullet and hoping eventually I can get in with one here locally. The hospital is only 5 minutes away but of course after sitting there waiting to be seen for 3-6 hrs. keeps me from wanting to bother going there at all. There is one after-hour clinic. I went there when I broke a bone in my foot. The place was packed with people from all over the place.
So, no I don’t have access to medical marijuana or cannabis oil. Got to have a doc to get a script. I don’t feel like going illegal.
I’ve been diagnosed with Fibro by a Rheumatologist who specializes in it and he wanted me to take Lyrica and Tramadol. I chose not to go that route. I do not manage drugs well at all. Right now they aren’t worth it for me. Who knows. Might be the same issue with cannabis.
I don’t like thinking of the crush we Baby Boomers are going to be putting on our health care system.
I think you are right about it being a coping mechanism.
I love raking leaves in the fall, but my shoulders are so bad now that if I do much raking I’ll pay for it days after. I’ve been in bed since 6 pm. Trying to rest. We have to drive to Polly’s parents home tomorrow. Shouldn’t do it, but we’ve not been there in two years thanks to me. Dad is having major surgery next week…important to see him before he does.
It is important. Hope all goes well for him and for your drive.
BTW, I like raking too. Always have. My left shoulder & my allergies, not so much. 🙂
Bruce, what is the present thinking on Fibromyalgia- undiagnosed until recently, or a modern problem?
The people I know that have this disease are often in excruciating pain and generally end up with some form of depression, understandably related to the chronic pain.
You have so much value here, compensated or not. Fight as long as you can …
There are many unanswered questions about Fibromyalgia. Part of the problem is that the symptoms for Fibromyalgia are similar to other diseases. This is why most Fibromyalgia patients go through extensive testing to rule out other diseases. I’m of the opinion that Fibromyalgia is an autoimmune disease. I do wonder if there are environmental issues that come in to play. I do know that the researcher that definitely nails down the root cause will certainly when the Nobel Prize.
Thanks for your kind words, Tara.
Bruce
Researchers have discovered that people with fibromyalgia have inflamed blood vessels in their hands. I have to wonder if more research will uncover more areas with this inflammation. Still, they say just having the inflammation in our hands messes up our whole body. I’m sure they are doing more research.
I’m the genius that came up with the idea of you officiating weddings. I’m guessing that wasn’t such a great idea.
Let me suggest an alternative. Like the old Palmolive dish soap commercials you’re soaking in it already.
Who are the successful “published geniuses” that make money selling their books on a vanity press? People with well established blogs of course! Start (or continue) writing that book Bruce. It might not sell, but people who “make it” are always trying different things. You’ve got the time and you’ve got a great story. Something, I might add, the world needs to hear. Next time take the golf cart too.
Bruce, reading your blog has been so helpful to me. It’s helped me to see reality even better, and to try to live my life making rational decisions based on what is actually happening, not some possible ever after. I also think you are like a minister to the struggling Christian, ex-Christians, agnostic, atheists, and more. This is good and important, and WAY more important than a little job in the store. I do understand the satisfaction of working, doing a good job and getting a paycheck. But WE need you!!
Thanks, Becky.
Hang in there Bruce. My dad always said life is tough and then you die. Not encouraging, but it does kind of tell you how things really are sometimes, without any sugar coating. Of course, it made me an easy prey of Evangelicals but I’m over that now thankfully. I can’t imagine being in chronic pain all the time. I deal with muscles soreness and stiffness from Muscular Dystrophy, and some days I want to just give up. I’m not sure what keeps me going. I guess it is the thought that things could be much worse, they always could if you really think about it.
I like what you are doing with this blog and the stories you share. I think it may be something that helps keep you going, so keep it up! Through all the pain and suffering in this world, it shows others how tough you are if you can deal with it especially without God. That is what helps me I guess. Someone out there is reading about you or watching what you do with what you have. To me, that is the key motivation that helps us all endure life as long as we can. We may not know it now, but each one of us in this world are making a difference.
Thanks, Kenneth. I appreciate your kindness and support.
I’m sorry, Bruce. I wish it was easier for you. I must say that you are holding up remarkably well, under the circumstances.
You know that you are not alone in your pain, but even so you may find this data interesting (by which I mean unsettling and then some):
http://www.nytimes.com/2015/11/03/health/death-rates-rising-for-middle-aged-white-americans-study-finds.html?action=click&contentCollection=DealBook&module=MostPopularFB&version=Full®ion=Marginalia&src=me&pgtype=article&_r=0
Thanks, Emma. I read that article. Quite provocative and depressing.
Bruce, I just read yesterdays post. Wow, so much of what you said I have said myself. I just retired 7 weeks ago, kind of a forced thing . The company I had been working for the last 25years offered an early for people 59 and older,I just turned 61 in Aug. I had to jump on it because being on FMLA and the pain I deal with I had been unable to work a full 40 hour week in a very long time. I can really relate to many of your experiences. I had to chuckle reading your walk back to the car after the game. I was reminded of a time about 9 years ago before I got my power chair. I had been using a manual chair to get around longer distances when my van broke down about a mile from home. Half way home my arms gave out and I just couldn’t move any more. A local police officer stopped by and asked if I needed help but I stubbornly refused and said I was ok. I tried pushing myself but my arms stared shaking so much I couldn’t move anymore. I had to use my cell phone to call my wife and ask her to walk down and push me the rest of the way home. When my wife found out about me refusing help from the officer well, it was not a comfortable conversation.
I can also relate to the depression. I often find myself on the verge of falling into a very dark place that I’m afraid I might not get out of. I have been pushing myself to stay busy with many projects that have not been completed these past many years but I have to pace myself. Sorry about the long comment here but thanks for the chance to relationally unload a little. Peace to you Bruce.
Hey Fred,
Good to hear from you again. I appreciate hearing how things are with you.
Pride’s a big problem for me when I must rely on others. I know it is a problem…I should use a powered scooter in the store, but pride keeps me from doing so. I should let Polly load everything in the car, but pride compels me to put on the virile male front in public. It’s so hard to give in, even when I know it would make things better for me.
Take care, my friend.
I too am housebound, limited usually to my bedroom, by fibromyalgia and chronic fatigue syndrome. I know the existential depression arising from the hopeless prognosis, the search for identity bounded but not defined by illness. I know the unrelenting pain of body and soul. My life was ripped out from under me in 2007, and in 2015, I still struggle to acknowledge that I do have a life. And that it somehow has meaning. I’ve been suicidal because of it and I’m never all that far from despair.
I have followed your blog for several years and greatly respect your tenacity in continuing to blog through it all. My blog lapsed when I couldn’t face the questions anymore. I couldn’t write in the face of unrelenting, ever relapsing or flaring, illness. That you have continued to write inspires my admiration.
Kudos, sir!
Sandra,
Thank you for the kind words and support. I’m glad readers can, in some measure, find encouragement and support from my writing. I have a lot of sick friends…birds of a feather flock together, I suppose. ?
I’ve been in bed since 6 pm. As I mentioned in another comment, we have a trip to take tomorrow and I must conserve my energy. Even on a good day, road trips are quite hard on me.
Take care, Sandra.
I use to read your blog Sandra Heretic. I always appreciated your raw honesty. At some point I lost track of you but do remember you popping in here at one of Bruce’s blogs along the way. Gentle hugs.
I know how rough chronic pain can get. I have rheumatoid arthritis, an immune disorder. I think you may be right, fibromyalgia may be auto-immune related. I’m glad you have fought off the darkness that disability and depression can bring. Your writing helps me and others like me, dealing with both pain and disbelief or doubt.
I’m lucky in some ways. I’m still able to work (at a desk-job, I couldn’t work on my feet) but I live in fear that that state of affairs may not continue. Since my medical insurance comes through my employment, and my husband is looking to retire next year, I am terrified about losing access to medical care. Right now, I could get a plan through the state Exchanges, but if we put a Republican in the White House, my days of not being excluded from buying insurance because of pre-existing conditions may be over. That scares me more than almost anything. I’m turning 58 this year, so I have seven years to go before I qualify for Medicare. (My husband is turning 66, so he has it.) The possibility of having to choose between getting needed care and driving us into bankruptcy or forgoing care and becoming more disabled or dying – this isn’t a choice I should have to be considering…
Thanks for letting me get that off my chest. Feel better. Or, at least, feel as good as you can.
Tears here.
As I read your post Bruce, I laughed and cried…and now cry again.
And I smile, too.
“Hunker down”…great description. I understand it well. And it makes me cry to think about it.
The glow-in-the-dark from blood work. makes me laugh out loud. 😀
And the rest of it too…gives a peek into what it’s like to manage daily life…the mental aspect is huge, which I know you know.
Thanks for sharing, again.
<3