Let’s go to the Botanical Garden in Toledo, I tell my chauffeur. I want to photograph the spring flowers.
The sun is shining, the air is cool, a perfect day.
The car is loaded: camera, tripod, cane, and wheelchair. All the necessary tools of an aging crippled photographer.
Are you sure you want to push my fat ass around, I ask my chauffeur. And just like every other time I ask this question, she smiles and says yes.
The Toledo Botanical Garden is 50 miles or so from home. We arrive around 4 PM. Several hours of great lighting left, I tell myself. We pull into the parking lot, finding it full cars, limousines, and small buses. It’s prom night and hundreds of area high school student are at the Garden to get their photograph taken. They are dressed in ill-fitting dresses and tuxes, each trying to outdo the other on their special night.
We finally find a parking spot. Actually, we make a parking spot where there isn’t one. I ask my chauffeur, are you sure you want to do this? Like always, she smiles and said yes.
The wheelchair is unloaded and I am soon being wheeled along the paved walkways. I made sure before we left home that the walkways were wheelchair accessible. As we quickly find out, their idea of accessible is very different from ours. From potholes to broken cement to hoses stretching across the walkways, my chauffeur has great difficulty navigating. I hear her breathing become more labored. I turn to her and say, we can go if you want to. And just like every other time I ask this question, she smiles and says no. She knows, thanks to unrelenting pain, I rarely leave home. She wants me to have a good time.
Hundreds of high school students are gathered in groups throughout the Garden. Avoid obstructions, I tell myself. Go this way, avoid the crowd. But, no matter how we try to avoid the clustered students, we eventually are forced to stop and wait for them to move so we can pass.
The invisible man, that is what I am to these students. They stand towering above me and my slumping body. We wait, hoping they will notice we can’t get by them. Few pay attention to the man in the wheelchair. Don’t get upset, I tell myself. They will move.
As we come up one of the walkways, I notice a large group of students standing on the walkway. I say to my chauffeur, let’s go home. She replies, no, they will move. As we close in on the group many of the students move allowing the Moses in the wheelchair to part the Red Sea. One student refuses to move. His girl turns to him and says, hey let the guy go by. He looks at me with eyes I have encountered many times before and moves just enough to let me get by. His girl is none to happy with him. With anger in her eyes, she pushes her man and tells him MOVE! Put in his place, the towering student complies and moves so I can pass by.
Such is life in the chair. I think everyone, healthy or not, should spend some time in the chair. Believe me, the world looks completely different from the seat of the chair. Simple things like navigating the grocery store become an insurmountable task. Are people callous or indifferent to the handicapped? Sometimes, but most people have no frame of reference for understanding the challenges of having to use a wheelchair. (or a cane) They can walk and move at will. Any obstacle can be moved or navigated around. For the person in the chair, obstacles that are nothing for a healthy person, become a source of frustration.
I do my best to avoid crowds when I must use my wheelchair. But even then, at three in the morning at the local Meijer, shelf stockers often make the aisles impassable. They have a job to do, but I’d sure like to buy some groceries. I’ve concluded that there is no good time to go shopping. I must mentally prepare myself for the indifference of others. I must grit my teeth and ignore the pain inflicted on me by thoughtless shoppers. I think, someday, they will be where I am and then they will understand. For now, I am just the invisible man in the chair.
A week and a half ago, Polly and I took a road trip south, ending up in Delphos, Ohio. In a post titled Luck, Fate, or Providence, I mentioned an event that took place while I was taking some photographs of an old canal:
…Polly and I took a road trip to Ottoville, Fort Jennings, and Delphos. Like most of our trips, I took my camera equipment with me. As we were wandering around Delphos, we stumbled upon a lock from the era of the Miami and Erie canal. Getting down to the lock was a bit treacherous for me. I wanted to get as close as possible, so I gingerly walked down the concrete abutment to the lock. I didn’t fall, slip, or trip. Lucky me, I thought.
After ten minutes or so, I was ready to return to the car. I had two paths I could take. I could retrace my steps or make a big step and little jump to ground level, Polly said she would give me a hand, so I chose the latter. Polly reached down, took my hand, and began to help me up. And then, our world went crazy. Polly couldn’t pull me up completely and I violently fell forward, knocking both of us to the ground. If my weight had been balanced slightly the other way, I would have no doubt went careening down the concrete abutment into the canal. The fall would have likely killed me.
The good news? My cameras escaped damage, though one of them does have a slight scrape. The hood on the lens kept it from being smashed. Polly ended up with bruised knees and I ended up with a twisted ankle and hip and a nasty, bloody contusion on my left leg. It is still oozing slightly today.
I know I was lucky. I should have retraced my steps. This was the safe and prudent choice. However, Polly was standing right there and she said she would help. Why not, right? She helps me out of the recliner and car all the time. What neither of us counted on was how difficult it is to pull up a 350# man. When Polly pulls me out of the car or the recliner I help her. This time? I was dead weight and I almost literally became so…
Yesterday, I had Polly take me to Urgent Care in Bryan. My left leg is swollen, an inch bigger circumference wise than my right leg. The contusion is weeping fluid and has become infected. I am white, the wound is red and yellow, and I am trying to keep it from turning black. (shout out to the Evangelical song, Jesus loves the Little Children, red and yellow, black and white, they are precious in his sight) I am taking an antibiotic. The doctor swabbed the wound and sent it to the lab. The lab will do a culture to determine what is causing the infection. If warranted, the doctor said he will change the antibiotic, but he thinks the one he prescribed should do the trick. This is the same leg, BTW, that I had a foot problem with last fall.
Last Sunday, Polly drove us to Cincinnati, Ohio to attend the Cincinnati Reds-St. Louis Cardinals baseball game. We had a great time. There’s nothing like experiencing a live baseball game. When the stands are full, as they were on Sunday, the stadium comes to life. The cheers and the groans ripple loudly through the crowd, as Reds fans live and die with their team. In many ways, I find the live baseball experience to be a lot like a revival service. There’s that “feeling” in the air that resonates deeply with me.
That said, we have come to the conclusion that I can no longer take trips hours away from home. Driving to Cincinnati and back meant we were on the road for almost 8 hours. Whether we took the interstate or a state highway, the roads, thanks to a hard cold winter and a lack of infrastructure upkeep, pummeled my body. Mile after mile the roads bumped and banged my body, so much so that even double doses of pain medication couldn’t stop the pain.
As much as I want to cheer the Reds on in person, I know I can no longer do so. My body has issued its decree, cross this line and I will make you pay. As I have said many times before, a time would come that I was no longer willing to pay the price of admission, no longer willing to suffer the brutality of long trips. That time is now. I hate that it has come to this, but it is what it is.
Now this doesn’t mean that I can take shorter trips to places like Toledo, Fort Wayne, Magee Marsh, or Marblehead. An hour or two from home, along back roads at a slow speed, I can still do. There’s a minor league baseball team in Fort Wayne and Toledo, so I can still enjoy the live game experience. There’s plenty for us to see and do within a few hours of our home. There’s plenty of sites and out-of-the-way places to photograph. Instead of lamenting what I can’t do, I choose to focus on what I can do. This is me adapting to my environment. Shout out, Charles Darwin.
We recently bought a new car, a 2015 Ford Escape. We made this purchase because I was having difficulty getting in and out of our 2013 Ford Fusion. The Escape sits up higher and has greater head and leg room, allowing me to sit comfortably, even when I have to twist my body to lessen the pain. We are quite pleased with the car. Actually it is an SUV, but we call it car. Health problems have robbed me of my ability to drive any distance but a short one. This is another thing I’ve had to adapt to. For decades, I did most of the driving and now I must rely on Polly to chauffeur me wherever I want to do. Again, it is what it is.
The nasty injury detailed at the start of this post has proved to be a wake up call for Polly and I. I no longer can afford to push the envelope, risking injury. Since I am diabetic, any type of wound is a concern. I pastored several people who lost their legs due to a cut or wound that morphed into an abscess drugs and doctors could not cure. Despite all our miracle-working drugs, there are viruses and bacteria that can and do kill us. I must take better care of myself, not putting myself in circumstances that could cause physical injury. When I walk with a cane, I tend to ignore my limitations. When using a wheelchair, it is obvious that I can no longer pretend to be Superman. While I refuse to give up, I must face reality and adjust my life accordingly.
The good news is that Polly will still be by my side. We’re in this together until death do us part. Her love and care make the pain and suffering bearable.
The weatherman says sunny and 55, I hope he’s right.
I busy myself getting ready for tomorrow.
Clean the house, I tell myself. Can’t leave if the house isn’t clean.
House is clean.
I put my camera equipment on the table, tripods behind the door, ready for loading in the morning.
I check the camera batteries and make sure the flash cards are installed.
No need for the GPS, we have iPhones now, so Google maps will direct us to our destination. Just to safe, I put some paper, a pen, a flashlight, and maps of Indiana, Michigan, and Ohio in my briefcase and put it with the camera equipment.
Clothes, shoes, wallet, jacket, and hat, all ready for the morning.
She will be home soon.
She sees that I cleaned the house. She smiles and shakes her head. She knows…36 years of knowing…
I want to be out of the house by 10, I tell her. And I mean 10, I add, knowing that I am fighting a battle I have lost more times than I can count.
A restless night, I get 4 hours sleep before she wakes me up.
The car is loaded, ready to go. Ten minutes late…
She drives. I want to drive but I know I can’t. I am no longer physically able to drive. I know this, but I still want to drive. She ignores me, knowing I will no longer put up a fight.
Off to Fort Wayne first to drop off papers at the hospital. I owe them $5,000.00. I hope they will reduce the amount I owe.
She wants to go Rome City to see an old, no longer functioning self-sustaining nunnery.
It’s not long before I start feeling every bump and thump as we ride over roads savaged by harsh Midwestern winter.
Our destination is South Haven, Michigan. Sunset is at 7:45. I want to get there by 6:00. How we get to South Haven is undetermined.
This is a Gerencser road trip, one our six children experienced many times. A general destination with no certain route.
The assault on my body continues. I complain some, but I know it is not her fault. If I had known this is how painful the trip was going to be, I would have stayed home. I am glad I didn’t.
North and West we travel, meandering down never before traveled roads.
I set Google maps to no highways or toll roads. We want to see what most people never take the time to see.
Amish, horses, buggies, laundry gently blowing in the wind. What a pleasant surprise.
Where’s their school, she asks. Soon, we stumble upon it. Look at all the bicycles and yellow vests.
Countless stops so I can get out of the car and take photographs. It’s not long before my shoes are muddy, muddying up the floor and mat cleaned the night before.
Sometimes, I stay in the car, using the window to steady my telephoto camera lens. We fuss a bit as she tries to maneuver the car so I can take a shot. We’ve been fussing for 36 years. It means nothing, our love transcends anything we could say to one another.
We finally come to a road we’ve traveled before. Soon we come to Paw Paw, Michigan. Let’s stop at the winery, she says, and I say, sure.
So much wine, so little money. I sure could use a drink. We buy four bottles of inexpensive wine. As we checkout, I tell the young woman waiting on us that we were once part of a religion that forbade the drinking of alcohol. She replies, really? Her face tells me she’s never heard of such craziness. I go on to tell her that we were 50 years old before we drank wine for the first time. I chuckle and say, we are living the 60’s and 70’s a little late in life.
She needs to use the bathroom, so does our daughter with Down Syndrome. I’ll tell her I’ll take the wine out to the car, She says, OK, and hands me the keys.
I open the trunk of the car, put the wine in, and carefully wrap the bottles with a towel.
I slam the trunk of the car and reach into my pocket for the keys so I can unlock the car.
Panic. You didn’t. You fucking idiot. Surely, you didn’t lock the keys in the trunk? You damn idiot, yes you did.
Soon she comes out to the car and I tell her what I’ve done. I thought I had ruined our day. She calmly reaches into her purse and pulls out the second set of keys. Disaster averted.
I am mad at myself, still upset over the keys. 57 years, and I’ve never locked the keys in a car until today. My self-esteem takes another dive.
Back on the road, time to head to South Haven.
The roads continue to pummel me. She notices that I am writhing in the seat and says,I’m sorry. I say, it’s OK. It’s not, but only death will keep me from reaching our destination.
5:00 Pain meds. She notices I have taken the maximum dosage for the day, but she says nothing. She knows I will have to take extra pain meds to get through the day.
It’s 5:30 as we pull into the parking lot near the beach. She and I have been here many times. It’s our favorite place to be. There’s nothing better than watching a Lake Michigan sunset, especially when the one you love are by your side.
The sun is shining, it’s 54 degrees.
The Lake is frozen, the beach is covered with a mishmash of ice, melting snow, and sand.
People are out and about. One young woman is in flip-flops and a white sun dress. Silly humans, we are, worshiping the warmth of our star.
We make our way out to the lighthouse. I walking slowly, prodding the ground with my cane, making sure the slushy snow beneath my feet is firm.
We finally reach the point, the first time we’ve been here when the Lake is frozen.
People come and go as we stand there enjoying the warmth and the view. What a wonderful view…
A talkative woman stands nearby. Her back is to the sun and Lake. She seems only interested in talking to those who are near her. She’s lecturing a young couple about an upcoming sales tax initiative. She’s against it. She turns to me and asks, do you read? Yes. What do you read? Books. Philosophy? Yes. I’m thinking, really, here I am 3 hours from home, away from my blog, and I am getting quizzed about philosophy? The talkative woman asks, Who? I snap back, Kierkegaard. This satisfies her and she turns to the woman in the white sun dress and tells her she’s crazy for being out there in flip-flops and no coat. I thought, I’ll tell you who’s crazy.
We walk back to the car and drive to the bluff overlooking the Lake. I’ve never taken photographs from this spot before.
I set up my tripod and prepare both my cameras to take photographs of the sunset. The show will be short and sweet, I know I must be ready.
She gets out the portable camera I bought her for Christmas. She is quite proud of her work. I hear her camera beep, knowing she is photographing me going about my craft. I used to object, but I know my children and grandchildren will one day appreciate her photographs. I’m reminded of what my friend Tom told me, photographs are about the memory, the moment. That’s what matters.
Soon the show is over and we quickly load everything back into the car. The temperature is quickly dropping. By the time we get home it drops 20 degrees.
As we make our way down from the bluff, I ask her to stop at the beach. Just a few more shots, I say. She’s cold, so she stays in the car as I setup my tripod and take a few photographs of the lighthouse, now lighted by incandescent lights along the walkway.
It’s 8:15 as we walk into Clementines. All the adrenaline has dissipated and my body now screams for attention. I can barely eat. I use the bathroom before we leave, leaning against the stall, a few tears come to my eyes. Why does it have to be this way? Why does one day with my friend and lover cost me so much?
More pain meds.
I have a counseling appointment scheduled for tomorrow. She knows, and will cancel it in the morning. Bed is what awaits me come tomorrow and several days after that. It’s the price I pay for living, for experiencing the beauty of my wife and a Lake Michigan sunset.
It’s midnight as we pull into the driveway. We’ve been gone 14 hours and driven over 300 miles. Exhausted, she falls asleep in minutes. I take more pain medication and my normal nighttime meds. I’m so exhausted that sleep comes quickly.
12 hours later, I wake up, knowing that I must now pay for yesterday.
Is it worth it?
She’s at work now and she sends me a text. The sun is shining, want to go to on a road trip?
Rant ahead. Raw feelings revealed that might offend others. You have been warned!
I am quite open about my health and my battle with depression, chronic illness and pain. As most readers know, I recently had an endoscopic ultrasound to see if I had pancreatic cancer. I didn’t, which is good news, but the one thing that has irritated me through this whole process is the assumptions that people make about my lifestyle. If I would only do _______________, then all would be well, or so these I’m-not-a-doctor-but-I-stayed-at-the-Holiday-Inn people think.
Let me state the obvious: I am obese. I’ve been overweight for 30 years. Thanks to recent health problems, I have lost 35 pounds. I weigh less than I did at any time in the past decade. I do not feel one bit better for having lost the weight. My feet are still invisible and I can assure you that losing weight does not make your penis longer.
Are you laughing? A pastor told me years ago that he read you gain an inch in penis length for every 30 pounds you lose. According to this dimwit’s advice, if I got down to my BMI chart weight, I would gain six inches. That would certainly be porn-worthy.
Ten or so years ago, I saw an orthopedic doctor about a problem I was having with my left knee. After taking less than two minutes to talk to me about my knee pain, he pronounced that I needed to lose weight. Duh, like I don’t know that? But here’s the thing about my knees. I have a torn meniscus in each knee. I have had these tears since 1981. A doctor wanted to do surgery 30 years ago, but I decided to cut back on the amount of basketball I was playing instead. When I injured my knees, I was quite fit. I played basketball three times a week in the winter and spring and played softball several times a week in the summer. My weight had NOTHING to do with my knee problem, but all the orthopedic doctor saw was an overweight man and he judged me without knowing the first thing about me. (My first sports related knee injury happened in 1973 when I was 16 years old.)
I am 57-year-old, fat man. Thanks to Fibromyalgia and a host of other problems not related to my weight, I can no longer physically do many of the things I used to do. (I must use a cane or wheelchair to get around.) People who haven’t walked one step in my shoes or lived one day with the pain I have are quick to offer unsolicited advice about everything from exercise to diet to the latest, greatest alternative medicine. These advice givers take a bare amount of information about me, make some assumptions, and conclude I need to do ______________.
My cancer scare has encouraged people to give me advice about how and what to eat. Everyone has a diet for me, sure to fix what ails me. But, here’s what’s wrong with their advice: they don’t know how or I what I eat to start with. If they did, they would refrain from giving me unsolicited advice I do not need.
What’s the underlying assumption here? If you are overweight, fat, obese, plump, a tall person in a short body, or whatever term is used to describe your largesse, the assumption is you don’t eat right. Over the past few weeks, more than a few people have told me I need to change my diet. Eat this, don’t eat that. Eat less of this, more of that.
Here’s the thing, my eating habits, 95% of the time are fine. I eat lots of veggies and have a varied diet. Most of time, I don’t overeat. I will consume eat a candy bar from time to time, along with a donut here and there, but I don’t drink pop. If we buy cereal, I will eat it and if we don’t I won’t. Most of my meat-eating is fish and chicken. Simply put, my diet is not the problem.
I am never going to be a vegan, vegetarian, or a raw food eater. It ain’t gonna happen. If that’s how you eat, fine, but I have no desire to eat as you do. I try to eat responsibly and healthily, but I have no desire to obsess about food and turn it into a religion. I read labels, count calories and carbs, and try to have a lot of fiber in my diet. I don’t need any more information about food and diet. I know all I need to know.
Here’s the real problem I have with those who preach the change your diet gospel to me. They take what works for them and they assume it will work for everyone. They practice bad science when they equate the health problems I have with diet. I know of no study that equates a bad diet with Fibromyalgia. I have MS-like neurological problems. I know of no study that equates a bad diet with Multiple Sclerosis.
Yes, I have high blood pressure, but even here, is my high blood pressure caused by my weight or diet? I doubt it. I took the time a few years ago to research my medical records all the way back to when I was six years old. I found an interesting thing; my blood pressure was marginally high way back when I was a teenager. I have an aunt on my Mom’s side, along with several other relatives, who have high blood pressure. But, here’s what’s interesting: none of them is overweight.
I have one health problem that is directly related to my weight and diet and that is diabetes. When people hear that a person is diabetic, they assume the person is on insulin. I am not on insulin. I take a small amount of medicine each day. My blood glucose levels are under control and my A1C level is on the high side of normal.
Let me sum up this post. Yes, I am fat but there is little I can do about it. I try to eat well and I don’t, most of the time, over feed. I’d love to run, play ball, and exercise, but I can’t. Those who have the kind of problems I do know this, and they, too, have had to deal with the judgements and comments of the exercise police. I do what I can. I am not a lazy person; if anything, I tend to overdo.
I know this is hard for the physically fit to understand. Through the lens of their personal experience, they judge fat people, concluding they are lazy and indulgent. This may be the case for some fat people, but I know one obese Hungarian for whom that is not the case.
Here’s what I want from family and friends. I want love and support. I don’t need fat shaming or subtle condemnation. I don’t need diet books, diet articles, or personal opinions about my eating habits and diet. I know all I need to know about food, diet, Fibromyalgia, chronic illness, and chronic pain. A lack of knowledge is not my problem.
Why is that people take it upon themselves to offer unsolicited advice about diet and food? The same goes for medical advice from people who have no medical training and don’t know the intricacies of my health problems. I have a good primary care doctor. I know how to read and I know how to properly and sufficiently investigate the various health problems that afflict me. Again, I am well cared for and educated.
Yes, I could stand to lose some weight. Yes, I could ALWAYS eat less of this and more of that. Yes, I could always make improvements in my diet. I am quite good at self-judgment and I know the difference between lazy and can’t. What I want from my family and friends is love and support, not unsolicited advice and judgment. When I want or need the advice of others, I will be sure to ask for it.
Now, let me get the ice cream out, put six scoops of rocky road in a bowl and cover it with hot fudge, whipped marshmallow, pineapple, nuts, and a cherry on top. Oh wait, there is no ice cream in the freezer. Damn! I need to get Polly to bring home some healthy ice cream.