Chapter 12

CHAPTER 12
PASSINGS

As we age, there are times when we sadly come to see that time is no longer our friend. Our youth has long passed, and we must face whatever comes along with our aging bodies and retirement years.

     For Patty and me, the past couple of decades have been a time of dealing with the challenges of illness, and more sadly, of loss. As we age, we see the family and friends we’re blessed with going away, dying from illness, age, or accident. When they do, those people who have been blessings to us become memories. Fond memories for sure, but they're no longer around for us to share life with. We remember our loved ones, the times we shared, and the things we did, and nothing can take their place when they’re gone.

    My mother had two experiences that I remember where she seemed to know that death was imminent. I first saw it happen when my father passed away. The night before he died, she didn’t want to leave the hospital. We tried to encourage her to get some rest, but she resisted. A doctor pleaded with her to go home, being we were at Dad’s bedside all day. She finally relented, but she couldn’t rest once we reached home. Patty and I arrived home and were able to sleep until the phone rang just before 2:00 A.M. Knowing that Dad was critical, the ringer was like an emergency bell. It was Mom calling. telling us Dad’s condition had taken a turn for the worse. We rushed to pick her up and went back to the hospital. A few hours later, he was gone. Sepsis had taken my father’s life. We were told that the radiation used to fight his oral cancer had weakened him to the point that he couldn’t fight off infection. To make things worse, he was allergic to penicillin, the antibiotic needed to combat his type of infection. A reaction nearly killed him at a younger age when his appendix burst. There was nothing the doctors could do to save his life.

    Something similar occurred later before my grandmother died in 2003. Mom asked me to take her to the assisted living center where Grandmom lived, insisting that she had to get there quickly. I had been working from home most of that week because a heavy snowstorm blanketed the area. I asked her to wait for one hour because I had an important matter to discuss at the weekly meeting by phone. She reluctantly agreed, pacing while I prepared to call the office.

    Just after the meeting started, her phone rang and I heard Mom sobbing loudly. I had to quickly excuse myself because those issues weren’t that important anymore. Someone from the home called and told Mom that my grandmother had passed away. They said she laid down for a nap and entered into her final rest peacefully. There was no indication that her death was imminent, but somehow Mom seemed to know that it was coming fast. I’m glad that she died in peace, the way any of us would want to. Grandmom was a fine woman and one who had no problem telling you what was on her mind. She would never give up on anything either. Her neighbors often had to plead for her to set down the snow shovel after a storm or to get off of the kitchen chair that she stood on while cleaning her front windows from the porch. She was fiercely independent, working hard as a seamstress in a clothing factory until retiring. Back during our youth, my brother, sister, and I had an inside view of the Italian culture because of our grandparents and their friends. They may have been naturalized U.S. citizens, but they were authentic Sicilians to the very end.

     Had we left when Mom asked, we would have most likely been in transit as she passed away. It tore at me that I put work ahead of my family. I never made it a habit, but I did at what was a critical time. Everyone should have their loved ones with them when their time comes to an end. It can be difficult for the survivors but often gives them peace because they were there for that final goodbye; or for the dying to know that the family cared for them through their last breath. Mom seemed to know when it was their time. It was likely a coincidence, but it sure was a strange one. It often seems that things like that come from a dark place, but that certainly wasn’t our mother. Maybe she was willing to see what I wasn’t, that the lives of those we loved were coming to an end. It’s one of those things that will remain a mystery.

    We already had a few deaths in the family hit us hard. I think back to our niece Toni who died too young at the age of twenty-eight, two days before Christmas 2004. I had just arrived home from work when I heard the news. I parked the car and was looking forward to the long Christmas weekend when I saw Patty approaching from about a half-block away. As she neared, I could see she was crying. She told me of Toni’s tragic passing as we met. It was hard to believe that someone so young with so much to look forward to could be gone so soon. We were grieved for her and her parents, sisters, and her son. At that time, we thought her passing would be about the most painful we’d experience because of her age, but experience has shown us that grief has no limit. Everyone has their place of importance in your life, and when they’re gone, the grief hits in its unique way.

    Later, the year 2009 came, a particularly hard year for Patty and me. Less than a month before Mom left us, my sister-in-law was to be the first in our string of heartaches. Anna Marie was Patty’s twin sister. They were fraternal, not identical, and would talk on the phone endlessly. Even when the distance of most of the Eastern seaboard separated them, they were close together at heart. She had moved to Florida for a while, and Patty was ecstatic when she returned home. It would seem that those who had spent time together in the womb have a special bond that can’t be understood by others. Anna Marie claimed more experience and watched out for her younger twin, citing entering into this world nine minutes earlier as her duty to take care of her.

    An urgent call came from a doctor one evening asking to speak with Patty, shocking us with the question of her being Anna Marie’s next of kin. So we stood shattered as we listened to him explain that she had suffered a massive stroke and that her condition was critical. We rushed up to the hospital and met the rest of her family after making some calls, finding out that she was on life support. She had been battling a syndrome that doctors described as “sticky blood”, requiring her to take blood thinners daily. It was most likely that the same syndrome caused her to suffer the stroke. Our family doctor told us it was a genetic disease, so Patty was tested to see if she had the potential to have the same problem. Praise God, she doesn’t.

    Patty said that Anna Marie had trusted Jesus as her Savior sometime before all this occurred, so we weren’t concerned about her eternal security. What did have us troubled was that her situation was grim and her two adult children were still living in Florida. We were praying for them to arrive here to be able to spend some time with her. By the grace of God, they made it to Philly and had the opportunity to see their mom. Anna Marie was rarely without one or more family members by her bedside during this entire ordeal. We gathered around her, hoping for something positive to happen while at the same time being realistic regarding her condition. Patty said that her twin had squeezed her hand not long before she passed on. A doctor said it was impossible, yet a sibling confirmed it. Medical science has come a long way in understanding these things. It may have been an unexplained reaction or something that God allowed Patty to experience to give her peace. We’ll never know.

    It was just five days after Mom passed that we lost our Aunt Ruby. She was my father’s oldest sister, we got to know her and my cousins during our childhood in the late 1960s when they stayed with us while my uncle Pat was battling cancer at the Philadelphia Naval Hospital, a battle that sadly and ultimately took his life. Good things sometimes come out of tragedy, and although uncle Pat was seriously ill at that time, their staying here with us gave us a chance to know family members that we kids hadn’t known existed until then. Our house was crowded, but no one was complaining.  It allowed them to stay close by instead of having to make a round trip to and from Dover Air Force Base each day, and we were enjoying their company. We made the best of our time together. The family moved back to Tampa from Dover after my uncle’s passing. We didn’t see them again until we visited their home a few years later in 1972. We had the pleasure of seeing them together once more about twenty years afterward.

    All of those deaths came within such a short time of each other, about a month and a half. As the year ended, we hoped the losses were over. It wasn’t to be. A longtime neighbor died shortly afterward. New Year's Eve came and we found out we would once again have to sadly say farewell to a good friend. Kim was among the nicest of people we knew from the church. She and her family had moved to New Jersey not long before that where a head-on collision claimed her life along with her young daughter. We were shocked to see the report while watching the local evening news. So were many friends who called seconds afterward. Our phone seemed to ring  endlessly; each caller asked fearfully, “Was it them?” I just saw the same report, so I had no more of a confirmation than anyone else. Friends soon confirmed what we hoped was a mistake, and once again we had to say so long for now to the people we loved.

    It was tempting in grief to wonder who might be next. That was a question that no one wanted an answer to. We were grateful that we didn’t have to pay our respects to family or friends, at least for a while.

    One of the sad things about getting older is seeing more of those you love departing this world. The latter years would mean having fewer family and friends and more grief. I cope with it by remembering fond times spent with those with who I can no longer share time and experience. As time went by, it would be Patty’s sisters Dottie and Mary Ann, and brothers Michael and Franny who would leave us, along with a few friends. It’s a difficult thing, but nothing hits harder than when it’s someone who is young and has just started seeing the good things that life holds.

    It was April 2015 when I received a call around 6:30 A.M. from who I thought was my next-door neighbor. Caller I.D. is somewhat useless when you're rubbing the sleep from your eyes and each number seems like a blur. It was his son calling. He learned from a friend, a Philadelphia Police detective, that our nephew Nicky had committed suicide the previous evening while heading to work. Of all the losses we’ve suffered, his death hit our entire family hard. It was all a mystery: you would never know from Nicky’s demeanor that anything was troubling him. He stopped by to visit Patty and me the previous Saturday, something he often did. He told us he had to find a new apartment because of a problem with his landlord, but he showed no hint of anxiety, no indication of distress. He called again a couple of days before his death. Nicky gave no clue of what was to come, and we wouldn’t know anything until the call came.

    We were both reeling now and I had to call my nephew Jack, Nicky’s brother, to tell him the terrible news. Patty and I went with him and his wife Marlana to tell his mother and our brother-in-law shortly afterward. The pain from Nicky’s passing was compounded by seeing the family suffering his unspeakable loss while mulling over the question that no one could answer: Why?

    Jack and Nicky were good boys who became outstanding men. The boys would often spend Friday nights at our home on Darien Street with us, hanging out and playing video games or going to Phillies and Wings lacrosse games with me in their younger years. Having no kids of our own, they brought some of the joy we missed as parents into our lives. Patty bonded in various ways with our nieces too. Each one of them means so much to us. We still cherish those memories decades later

    We would not be the first family to endure such things. I plead with you to seek help if you have the urge to do something as final and heartbreaking as suicide. It’s a permanent solution to what may very well be a temporary problem. Consider those you love and who love you. They do care and want to help, probably more people than you’ll ever understand. If you succeed, their grief will be unbearable. Please, reach out for help. Don’t dismiss it if someone tells you or hints that they’re suicidal. It will be the sorriest decision you will ever make.

    In that same year that Nicky passed, we lost another who was so close to us. My cousin Robert, or Dell as everyone affectionately knew him, was staying with us for a short time, allowing us to grow closer. That December, he told us that he had an appointment to see his doctor and that he wasn’t looking forward to it. We were concerned about his health. There were a couple of events that caused us to talk with him, but he wouldn’t go to the hospital. He would remind us of his upcoming appointment and tell us he was fine.

    Still, it was shocking to get a text from him saying “Going to ER”. I somehow missed it earlier, but while at the bakery later, another text came: “At hospital. Had heart attack.” I quickly called and got his voicemail. I replied to his text to tell him that we were on our way. He called back and told us not to come; the doctors would be in and out and he needed to rest. I didn’t know then that it would be our last conversation.

     We arrived at the hospital the next day and found his grown kids and their mates waiting for us. They gave us the horrible news: Dell was on life-support. We remembered our experience with Anna Marie and felt as terribly for his kids as we did for Dell. We were hoping to find him sitting up in bed, joking with us, the hospital staff, or anyone he could get a chuckle out of. He was one of the most amusing people that you’d ever meet, finding humor in just about anything. He looked forward to going to a part-time job at Toys-R-Us: not because of the work, but because he loved joking with the customers. Dell was more like a big brother to my siblings and me than he was our cousin. He was my best man at our wedding. I spent a lot of time with him; doing things like camping, paintball matches, and all-night Risk and Tripoley games with friends. He had a historian’s knowledge of the U.S. Civil War, particularly when it came to the battle at Gettysburg. I visited the battlefield with him twice and he would show me where specific units fought, moving like a walking history book as he described the highlights of the battle. We had spent so much time together, and now all I or anyone else could do now was watch helplessly and console one another.

   Dell lingered on the machines for a few days and died two days before Christmas. It was on the same date our niece died years earlier. We were all by his bedside when the time had come. The team of doctors responsible for shutting down his life support approached. It seemed they could use a few lessons regarding sympathy toward grieving family members. Cold and mechanical, you would have thought they were the only ones in the room. They shut the machines down as the doctor in charge robotically called the time of death. She spoke loudly as if everyone within earshot needed to hear. With that, they reversed course and marched out in stiff formation. That was it. No pastoral care was offered; no words of sympathy were spoken. No one seemed to consider the grief that everyone felt, especially for his kids. I was fighting anger through my grief but said nothing. Perhaps it was the team’s way of shielding themselves from these tragic duties, but it all seemed so cold.

    I was with Dell eight years earlier when we sat by his mother’s hospital bedside as her life came to an end. He called me early that morning and asked me to head up to stay with her until he could get there. He didn’t want her to be alone as her life slipped away. When he arrived at the hospital, he told me I could go and that he would be okay from there. I wasn’t going anywhere. He was always there for me, and now he needed support. The nurse at this ICU was much more consoling than those doctors at the hospital where he died. As we watched her monitor silently flat-line, Dell sighed and said: “Oh, that’s not good”. The nurse approached gently, saying she figured we knew what had happened.  She said we could have as much time as was needed to say our goodbyes to her.

    As it happened, my Aunt Carmella died on my birthday in January 2007. I never made a big deal of the day. When it came around that year, I didn’t even think about it. Birthdays are for remembering the day when we’re joyfully brought into this world. I had to go home and tell Mom that her sister had passed away. I hated bearing the terrible news of her loss. I needed to be strong for Dell while I was there, and then for my wife and mother when I returned. It was a birthday to forget, but my mind won’t allow it.

    All this loss seems to be too much to handle. I know that it’s not over, and as long as there’s family, there will be times when heartaches come. I also know that our’s isn’t the only family to endure grief. It seems that so many we love have left us much too soon. Patty has two siblings left out of a family of nine. I’m blessed to still have my brother and sister, but we all know our best years have passed; reality shows us that we’ll face the same loss in time. We all want to have our families around into our older years. What we want and what happens are quite different things.  If we’re willing to look at things with our eyes wide open, those who are my age know that more than half of our lives are already behind us and the past is mostly a memory. Most people don’t dwell on how much time has passed, but we must remember that each of us has an unseen expiration date. We don’t know when that day will be here, but it’s inevitably coming. My wife and I will have to deal with losing the last of our siblings unless we go before them. That’s the way it is, the natural course of life. No, we don’t want to think about it, but it’s there and we can’t change it. Each one of us has an expiration date.

    The hardest will come when either Patty or I have to say farewell. One’s passing will crush the other. It shakes me to think about it. We’ve gone a lifespan from her slipping her address into my pocket and me finding my way to her door to experiencing a full life growing solid in our love for each other. It seems unfathomable, but it will come. Unless we live to see the day that the Church has looked forward to for centuries, we’ll be another pair parting in sorrow, saying our last goodbye.

     I know I’ve bounced around throughout the years. Time keeps moving on and I hope to make the most of it, but I’m not the man I was. I’ve seen a lot of life’s experiences as most my age have: pleasure and pain, joy and sadness, gain and loss, success and failure. All those things have taught me something about myself, and the hardest things in life have taught me the most. Those are the things that compel you to learn. If I didn’t gain some knowledge or a bit of wisdom or some trivial event, it’s no big deal. If I don’t come out of a trial or hardship gaining something useful from it, then I lose, and those aren’t the losses that I want to accumulate over life. Given enough of them over time, they can become a huge weight to bear.

     This whole thing about loss reminds me of Job in the Bible. We can learn a lot from his tribulations and his attitude toward them. It’s easy to complain when things aren’t going well, bukt when I consider what Job dealt with, I know that I haven’t seen the worst of what we know as hardships. None of us look forward to them, yet God allows us to experience those things and endure them for various reasons. When I’m eulogized as my body’s laid to rest, I hope that others will be able to honestly say that I responded in much the same way that Job did when he endured hardship.  Like the Bible says of him: Job sinned not, nor charged God foolishly. (Job 1:22).  It doesn’t matter if someone sees me as a strongman or a wimpy fool. As long as I finish life without gravely sinning towards my Lord, that’s all that matters when it comes to my legacy. I know I’ll sin; the sinful nature that we’ve been born with guarantees it. I don’t want to be remembered as living foolishly when I have known God’s blessings for the greater part of my life.

     It’s easy to be goaded into sin by others with miserable attitudes. Job had this to contend with, too. When his wife told Job to curse God and die after experiencing repeated tragedy, he responded to her by saying:

“What? shall we receive good at the hand of God, and shall we not receive evil? In all this did not Job sin with his lips.”
Job 2:10.

    That’s the attitude and faith that I strive to have. I accept I’ll deal with health matters through the end. I have to be on guard about how I’ll handle them. Others will judge whether I have properly finished my life when my end comes, so I need to be vigilant until the end to achieve a proper report.

    Time drags by slowly when you’re no longer working and you end up having too much time for your mind, hands, or eyes to get you into trouble. Watching too much TV will corrupt your mind and idle thoughts can easily play tricks on you. There have been times in the early days of disability when I’ve found myself feeling somewhat useless. I may have not shaken up this world with noted achievements, but I feel that I’ve made some worthwhile accomplishments, and sitting around idle started causing me to wonder what would have been ahead if I had the opportunity to go on. I can’t do that and now I accept the fact that my life’s the way that it will be.

    Every so often, something happens that will shake my day up. Though some may be alarmed by the unusual ones, I find they keep life interesting. On another birthday, I had five visitors – all unexpected – just after 7:30 that morning. I was still in bed when I was stirred by their pounding on my door and repeatedly ringing the doorbell. When someone makes a racket that early, you know they’re going to make your day special.

     I answered the door and the lead man asked for me by name. I saw that they weren’t bearing gifts. When I asked what they wanted, they announced that they were detectives with the Pennsylvania State Police. I had to ask to see badges since no one had displayed them openly. That had me suspicious. They said they were looking for a family member who was residing at a halfway house after a prison release, bearing a warrant for his arrest. He supposedly had permission to spend the night at our house but never returned. This was all news to me.

They asked to come in and asked several questions when one of them said he had to use the bathroom. Another followed. Two detectives to the bathroom together? As the stereotype goes, only women go to the bathroom in pairs, and then, only when they’re out, so I knew what they were up to. They were going to check each room to see if he was hiding. When they returned, they told the others that he wasn’t up there and asked if they could check the basement. Sure, why not? I found it unusual that they asked permission since they came armed with a warrant. It didn’t matter if I said yes or no, they were looking anyway. I had nothing to hide and they found no one.

    The detectives thanked me for my understanding and cooperation and they were gone. I’m glad Patty wasn’t home at the time. She told me later that she would have been upset. Me? I blew it off and poured a bowl of cereal for breakfast. I could appreciate breaking up the monotony of another lackluster day, but it was an unusual way to do it. Still, it was nothing to get upset or angry about. If it happened twenty years beforehand, the neighborhood would have been abuzz about what happened at the Bennett house, even if it was nothing more than a fruitless search. Some of the neighbors of my younger years were relentless gossips: older housewives and others with nothing better to do than to yap the day away. These days, hardly anyone notices what’s going on. The neighborhood’s changed so much that I don’t know many of the newer folks on the block. Not getting further than the front step other than for church services and doctor appointments or the occasional walk hinders new associations. So just one neighbor mentioned the event to a good friend and he was amused to hear about it. That family member’s mother called later that morning to apologize, but there was no need to. I wasn’t upset and told her that I was good with it. She had enough to worry about, but things are okay between us.

    Things keep changing, but life still goes on. My health continued to decline, with more trips to the hospital for abdominal pains from what they kept telling me were Crohn’s flare-ups. In November 2015, my cousin rushed me to the ER because the pain caused it to feel like my upper-right side was being ripped open. Even when the nurse continued to hit me with morphine injections when she could, the pain wouldn’t ease up. It would be several hours before relief finally came. I spent the next three days without solid food to allow my digestive system to settle down. I had nothing to consume but gelatin, liquids, and IV fluids. The doctors kept blaming Crohn’s, but I kept telling them it was higher in the belly and just below the chest. They would dismiss this, saying when one part of the area is inflamed, much of your intestinal area is. It didn’t matter that my intestines were lower. We went through the same Q and A as we did at previous admissions. They told me once more about immunomodulators and said it was my only option because having MS precludes me from using the newest biologics. Again they tested for infection and found no evidence of it. They won’t prescribe biologics if you have any infectious illness like hepatitis or tuberculosis. At that point, I decided to do what family members had urged me to do and see another GI doctor for a second opinion.

    Had I listened earlier, I could have avoided quite a few hospital admissions, CT scans, and a lot of suffering. I asked my primary care physician to recommend another GI doctor, and he hit a home run with the next one. I checked him out before making an appointment, and he seemed to be one of the most patient-oriented doctors around.

     While discussing my physical problems, Dr. Craig asked me to describe the pain. “Wait, wait: Describe the pain again.” When I told him about the area and intensity, he looked at me sympathetically and said, “That’s not Crohn’s, that’s your gallbladder”.  He referred me to a surgeon at another hospital for a consultation, who concurred. In January 2016,  the offending organ was removed and the problems were gone with it. Until that operation, I knew when another painful abdominal experience was coming on, and it would last a week or more. It would start with internal pressure and continue to get worse with each meal until I found myself back in the ER. After more than seven years, the pain has not returned. I still have some soreness and some pain due to Crohn’s.  Being a chronic disease, I expect I always will. Some foods aggravate the condition, so I’ve come to learn and avoid them.

     Time would continue to bring more changes to our church. Pastor Kerr decided that it was time to try retirement once again. Christian Pennachietti became the man who would continue to undershepherd Third Baptist Church as our newest pastor. Before coming here, he faithfully served as a deacon and was active in his local church. He likes to be called Pastor Chris and he’s friendly and caring with the people at the Church. He preaches well, engaging the congregation as he preaches God’s Word. He’s the right kind of pastor to motivate those who are more likely to sit motionless as the gospel is preached. We are not a charismatic church, but the gospel is the good news of Jesus Christ and the preaching of it should stir a believer in some way. That doesn’t make any of our previous pastors less effective. They were all able to evoke a response from worshippers in their specific ways and help people gain a closer walk with God.

    I miss being involved in church affairs as I had been in the past. I do appreciate being given the opportunity and trust to do the things I was able to. I used to be active in so many things that between home life, work, and the things done in the ministry, I was almost always busy and was seen at the church so often that one neighbor seriously asked if I owned the church. I gave a surprised chuckle at the question but explained to him that I was a member and that the church is by definition the believing people who are a part of it. The building is where we come to worship God. That’s something that we believers sometimes forget when we casually say “We’re going to church.” Most of the activities I once took part in there are now part of my past. Now there’s not much for me to do. I remember when my friend John used to tell me to relax and let other folks take some things off of my hands. I was reluctant to do that because I loved serving God and at the same time helping the church’s people. As time went on and disability set in, it made sense to heed John’s advice. I appreciated his caring about me and my physical needs and I should have considered his sincerity, that he was looking after me. I can be stubborn and fail to listen to those who are looking out for my best interests.

    At home, Patty sometimes says: “You’re going to do what you want anyway” when she sees me pushing things to my limits. I know she’s right, and I  often pay for it when I do. I’ve fallen a few times because of it, fortunate that the worst injuries were minor bruises or abrasions, and once, a slightly-torn rotator cuff. I know that it’s going to be a not-so-good day when she sees I’ve goofed and I have a swollen face or she finds me pushing myself off the floor. I’m trying to do what I can for myself for as long as I can, but I know I have limits. I don’t want to become 100% dependent on others, but that’s not within my control. I know it can happen, but that time hasn’t come yet and I pray it won’t.

    I hate the thought of tests and the news they may bring. A scan in late 2016 demonstrates why. In November of that year, the physician’s assistant at my neurologist’s office recommended I do something called a DAT scan and when I asked about it, she said it was routine. In nineteen years of dealing with MS, I thought that I knew all the tests involved with the disease. I ended up breaking my own rule of not researching a medical issue or test until a doctor tells me what I’m dealing with to avoid any unnecessary fears. I searched the Internet and found that it had nothing to do with my existing illness. The scans are used to identify Parkinson’s disease.

    Parkinson’s?  Surely, she had to be mistaken. Ultimately, the scan found what she suspected. It came back positive, and now I face the challenges that come with a third chronic illness. The PA later told us she had ordered that scan because she noticed my unusual body movements and my facial expression was like a mask that didn’t often change. I’ve since read that these are common signs of the disease. Everyone knows of hand tremors as a sign, but many lack knowledge of the other symptoms. I was one of them, but I’m reluctantly learning. My tremors are minor, barely noticeable unless you’re looking for them. 

    I was blowing off other symptoms, believing they were part of MS. One of them is spasms. I’ve dealt with them for years and they were controlled by medication until that drug no longer worked. I’m told what I’m feeling now is called dystonia. Whatever it is, it’s quite like what I’ve been experiencing for years, but more intense. The nerves in my legs become rigid, tensing until they release with a kick. It happens daily and often it awakens me midway through a night’s sleep. Cold weather or air conditioning enhances it. It seems that there’s always something new coming, but wondering what will only make things worse.

    When you’re not in peak health, you need to use care in all you do. I’m accepting that more than ever. There are things that I have taken for granted all my life that are now challenges, some that I have no choice in when it comes to needing assistance. That includes two of the most basic and important things in a person’s life: eating and drinking.

    It was February 2017, and I was having a midday snack when I started to choke. Patty heroically did the Heimlich to clear the food from my esophagus, and I thought I was fine from there. Three hours later, intense chills came on. I guess acceptance still has its limits: I should have known from Mom’s prior experiences that I had aspirated some of the food while choking. I went to nap for a while and woke up drained of all my energy. I crumpled to the floor as I tried to stand, having no strength to lift myself. Unsuccessful in her efforts to help, Patty asked our friend Harry to assist her in lifting me. They were fighting to lift dead weight, and they were unable to do it. All I could do was lay there between the bed and the wall. The medics were called and moved me with some effort; taking me downstairs on a glider chair and onto the gurney for the trip to the hospital.

    The ER docs confirmed what I already knew:  I had aspirated my food and particles in my lungs caused pneumonia. I came in with a one-hundred-three-degree fever. The first night was spent in the ICU out of precaution. The next morning, a speech therapist came down to evaluate my swallowing in a low-tech way: feeling the movements of my throat as I swallowed graham crackers and water. She offered a few tips on eating to avoid a repeat. I would spend the best part of the week being pumped with antibiotics to kill the infection and other fluids to rehydrate and get some rest.

    Once discharged, I felt like everyone watched how I was eating. Some would advise me to “go slow” or “take small bites”. They meant well, but I felt like I was under constant observation. I knew that it was out of care; no one wanted me to go through this again. So I became more vigilant about things that could be troublesome if I didn’t take them seriously. Whatever care I took, it wouldn’t eliminate the unseen problem that causes aspiration.

    As the year went on, walking became more troubling. I was losing strength in my legs, and a cane no longer helped me to remain standing or walk moderate distances. I acquired a rollator to help, one of those four-wheeled walkers with a seat and hand brakes. The cane was okay for walking a few feet, or if I was standing for a short time. For anything more, I required more stability. I found that out the hard way when departing for a quick store trip. I figured I’d be in and out and could sit or lean when I had to. It was a bad decision. The resulting crash and the cuts to my face would ensure that I never tried that again. There were times when I was out with my friend Larry and I had trouble moving or standing. He would help me into the car and stow the rollator in the back. When I was alone, I would sometimes have to take a seat once I reached the car and wait to regain strength to load the rollator and get behind the wheel. Larry would often try to encourage me, knowing that things were becoming more difficult. We would often go out to lunch and discuss interests, both spiritual and secular. He was a huge help. Larry has since moved South, but we keep in touch. Good friends are hard to come by. I miss him being here in the neighborhood and at the Church.

    December 2018 started a months-long descent into what seemed to be worsening Crohn’s Disease. It made for a very rough Christmas season. Removing the gallbladder ended the bouts of severe abdominal pain, but it wouldn’t change the fact that Crohn’s was still lurking. It seemed to flare, and the year 2018 would start badly. Just three hours after the New Year rang in, Patty called 911 once again. My fever was blazing, nearing one-hundred-four degrees. She tells me that I was delirious from the elevated temperature, bellowing at the ER staff. She told me I was yelling: “Don’t you put me on a feeding tube! Don’t you do that to me!”, rambling incessantly. I don’t remember any of it. Although my mom had to be fed by tube, that was never something that I feared would happen to me.

   I do remember being wheeled to a room on the fifth floor when they told me that I was having another Crohn’s flare-up with Colitis complicating it. Great, here we go again with the fluids and gelatin. At the local hospital, they have but one flavor of the wiggly stuff. That flavor would be orange. From earlier experience, I vowed never to touch that stuff again. Amusingly, I wrote a letter to hospital management to air my complaint. I rarely grumble about simple things, but it defies common sense when some patients can only have soft foods and you only have one flavor available for them. Whoever read my letter probably had a good laugh. I challenge them to eat one flavor of anything for days on end. Hopefully, they’ve made changes since then, but it won’t matter now, at least to me. It’s one of the things I can no longer eat.

    I may have hit my lowest point during this admission. A nurse placed a commode by my bedside because diarrhea that was worsened by colitis was unrelenting. Even with the hopper nearby, I had just a few second's warning to reach it before losing control. This was happening multiple times daily. The nurses and aides were very professional and patient with my situation, but I felt morale was starting to hit bottom. I’m fairly easygoing, but this situation was wrecking me. It seemed that it wouldn’t stop for anything. It didn’t help that IV bags were repeatedly swapped out to prevent dehydration. The extra fluid seemed to compound the problem, and the repeated dehydration caused my potassium level to drop to a dangerous low.

    In time they got somewhat of a handle on the situation. The labs showed that no infectious disease was causing it, which was a good thing. I was discharged after five days and was on my way home. You come to appreciate being in your own home after all of that.

     The comfort didn’t last long. I was home in time for my birthday, returning just a week later. They took me back around 5:30 that Saturday morning. I went to bed with my chest rattling that night, thinking a chest cold was settling in. I woke up in a sweat, gasping for every breath and sweating from yet another raging fever.  

    It was a familiar path: Into the ER, then back to the same fifth-floor area with the same nurses and aides. This time it was for a second case of pneumonia, coupled with another respiratory infection that we now know today as RSV. I was still doing the two-step and missing my goal of reaching the commode before another accident could cause a mess. The bed alarm hindered my movement and was no help. They had me listed as a fall risk, so if I stood up to move or shifted a bit, a nurse or aide came in to turn off the alarm and lecture me about leaving the bed without assistance. I’d stand to stretch my legs when no one was around to help, and suddenly a nurse would appear to admonish me. “No, no; you don’t get up without someone’s help!”

     I could have used the bed alarm as an advanced help if I wasn’t feeling halfway to the grave and didn’t mind an argument. If you push a call button, someone would eventually come to help. But if you stood up, someone would soon rush in, if only for the joy of reading you the riot act. Then you would have their attention and have your needs met.

     I knew I felt crappy, but the staff never did tell me what my actual condition was. The indicators weren’t good. Watching the telemetry info come in, the nurses or aides would use the intercom to tell me to put my oxygen cannula back on. I told them I didn’t remove it, and someone would stick their head into my room to check, thinking I was being difficult. When they saw the cannula in place, they would urge me to breathe deep, concerned because I wasn’t taking in enough oxygen.

    This all happened because I had aspirated food once more. The x-rays showed fragments in my right lung. There was no event to indicate aspiration: no choking, or gurgling; nothing unusual was noticed. The speech pathologist told me it was called silent aspiration and told me that it could be more dangerous because I wouldn’t know when it was happening. With no warning when food or drink entered my windpipe, it could mean that I would be less prone to know another event was occurring and to seek help. To make things more complex, something like the flu called an ESV virus had set in and it was bad. The saying “go big or go home” applies to a lot of things; not so much to illness.

    After a few days of four different IV antibiotics and a lot of rest, they allowed me to have soft foods. For a couple of days, that included the dreaded orange gelatin. I refused to eat it, and now  it’s forbidden food. At the risk of upsetting my Crohn’s, I did eat oatmeal for breakfast along with some scrambled eggs. They wouldn’t let me have breakfast meats until they did a swallow study to determine which foods would be safe. Being this was my second go-around, they wanted to confirm or rule out any swallowing issues. The results didn’t make my day.

    What they found was a syndrome called dysphagia. It was the same problem that caused my mom’s aspiration, though less severe. Dysphagia causes a flap of cartilage in the throat called the epiglottis to malfunction and food or drink enters the windpipe rather than through the esophagus into my stomach. This is because the epiglottis fails to cover the windpipe as I swallow. It can occur when MS is at a more advanced stage, but also earlier. It can also come from other neurological illnesses including Parkinson’s disease and stroke.

    Dysphagia causes food or liquid to end up in the lungs where it doesn’t belong. Happening repeatedly or once with enough volume, a case of pneumonia is sure to upset things. So now I’m limited to the things that I can safely swallow. Crohn’s had already caused me to eliminate some foods. Now I can’t eat much of what has been common for decades. With my diet restricted, I’ve become more aware of how much food is an important part of our lives. Safer foods can be discouraging and bland, and they're hard on your social life when you have to watch and eat slowly. Holidays can be rough when there’s a variety of food available that is off-limits. On rare times that I’m going out to dinner or lunch, I’ll check the menu online to be sure that they have at least one thing that I can eat safely. It’s easier to go to diners with a variety of foods, but they’re not the best choice for dining out. Amazingly,  I can still have pizza as long as I avoid the harder crust at the edge. I can live with that. Anything I drink must be thickened to honey-like consistency using a powdered thickener.

     It was a huge change for me. My doctor asked as he made his hospital rounds how I was handling those changes. I told him: "It's doable, but thickened drinks don't do much to quench your thirst" I'd learn that and more as time passed.

     I noticed Patty feeling bad for me and was eating the same foods that I safely could. She worried it may trouble me if she ate foods that I can’t in my presence. We discussed the issue one night and I explained that she didn’t have to deny herself the foods she wanted on my behalf. I’m grateful for her caring about my feelings, but it would be unfair to her and selfish of me to expect her to live this way. As much as I miss many things, I’m fine with it if she eats when I’m around.

    It wasn’t easy making these changes, but I’ve adapted to them. Why complain when I know things could have turned out much differently? I could be permanently tethered to a feeding tube like Mom was and be miserable. Instead, I do my best to stay upbeat. The talk of a feeding tube has come up a couple of times. I was losing more weight because, like many with dysphagia, malnourishment is an issue. Patty discussed the matter with our doctor. When he mentioned a tube to supplement my nutritional intake, she told him that I would fight to the end to avoid it. My GI doctor discussed it for that purpose as well as a way to fight inflammation from Crohn’s, but I put a halt to that conversation quickly. Who knows how I’ll handle it if the need for one arises? I can’t fix my mind on that. It’s God’s will that matters, not mine, and it’s a waste of time fretting when I can’t do anything about it.

    Decisions like that are difficult because they affect more than just me. Declining the tube could mean starving to death and would leave Patty a widow. I said before that I didn’t dwell on things and I don’t, except when those things affect her. It’s difficult to think of how either of our passing would affect the other, but it has been on my mind at times. There are decisions that I’ve already had to make because what affects me impacts her future, and I’d be foolish to do that without praying and seeking God’s wisdom. We’ve already had “the talk”, a conversation about when the time comes. I’ve done my best to ease the burden for Patty and have everything prepared as far as who to contact and what to do if I go first. At least I hope I do, not wanting to miss anything. We don’t want to think about what’s coming, but it’s a reality that one of us will someday have to face. Anyone who’s lived to be my age knows someone who's been there.

     I sometimes think of those times when a  spouse dies within hours or days after the other. I wonder: Is it a coincidence, or does God have mercy on them because they had been so inseparable? My thoughts are that He might just do that, but so many good folks are left to survive their spouses and face their remaining time alone, so I’ll never know.

    Overall, life’s been good to me even with these things I struggle with. God is greater than anything that life without Him has to offer, and I praise him that I’m still here. The last time I was admitted, no one at the hospital mentioned how I was doing other than that my breathing was too shallow. My body felt like I had been drained of everything, but there was no talk of prognosis or anything:  no good condition, bad condition, or anywhere in between. But a notation on an Explanation of Benefits or EOB from my insurance company after discharge caused me to see something different from past stays. It read: “Admission from Emergency Department due to life-threatening illness.” Yet another EO B noted “Critical Illness”. In all of my medical history, that’s the first time I had seen anything mentioned as remotely serious as that. I was in isolation the entire time that I was hospitalized: no one could enter without a mask, gloves, and gown for my protection, not even for a moment. After my discharge, anyone coming into our home had to wear gloves and masks until I saw my doctor two weeks later. That meant few visitors. Given my situation, I felt uncomfortable with others around me, so that was fine.

    My attention was aroused one day when I heard Patty talking on the phone. She told a friend that she hadn’t spoken to in a while, “I almost lost Brian last year”. What was that? She never told me that the hospital staff mentioned my condition being that bad. When the conversation ended, I asked her what she was talking about. She confessed that I was in terrible shape and the hospital staff kept telling her I wasn’t “out of the woods yet”, but she didn’t want to tell me for fear of discouraging me to where I’d give up fighting. She told me she’d come home from the hospital and get on her knees in tears, praying for me. I wasn’t angry when she told me. How could I be after all the care she’s given me, or given I withheld facts about my health from my mother out of concern for her? I know that some people may give up the fight by things like refusing treatment, but giving up the will to live? I hope that I will never go out that way. Leaving Patty behind when I could have avoided it wouldn’t be an option. She never gave up on me, and I will be there for her until that decision isn’t mine to make anymore.

    It took four months to get the uncontrolled bowel problems settled. Until then, I didn’t leave the house and would barely do anything. My GI doctor threw in everything he could think of to solve the problem. Thankfully I was able to call his cell phone and avoid an answering service or a doctor on call who knew nothing about me. I may have had to wait for a return call after getting his voicemail, but he didn’t take long to respond. As I said before, he was a very patient-friendly doctor.

    I was sad when he retired shortly afterward, but he was the right doctor at the right time. In the end, he figured out that the original medication used to treat my Crohn’s had since become a problem. He had me stop it, and almost instantly, life returned to normal. At least the new normal that I know. My memories of being in good health may be a memory, but I was no longer a slave to the commode and I was able to leave the house. It was a difficult experience, but it was over.

    Stopping that drug did lead to a compromise: I now take a medication that has a risky downside. I’ve been stubborn in avoiding drugs that suppress the immune system. The medication I’m taking leaves me at some risk of acquiring illnesses and infections. Fortunately, measles and chickenpox are not as prevalent as they were. The information sheet says exposure to either could be fatal. It is noted in that info to stay away from people who are sick. That could be daunting when you’re in the midst of a group of people and someone refuses to stay home when they’re ill. I did when I was younger, but the more you live, the more you understand that there’s more than yourself to consider.

    It was great getting out of the house again, and especially returning to be back with the church. After more than four months, it was the longest that Patty and I had ever been away. Being sidelined helps you to understand the need to take care of yourself and do something positive with your life. For a believing Christian, it also helps you to realize the importance of church attendance and fellowship with others of like faith. There’s much more to living than feeling well physically and emotionally. You can’t neglect your spiritual life, yet it can get easier the longer you neglect it. Being happy and healthy is great, but for those without Jesus, it’s a life with a great void. Praise God that He filled that void more than three decades ago.

    I know the time will come when I won’t deal with these things anymore, but for the present time, I fight. I’ve come to accept that chronic pain will be an everyday experience. But I’m not alone and know that life would be miserable without a personal walk with Jesus Christ. Through it all, God has given me the strength to carry on, and He has put many people in my life to offer encouragement. They’ve helped to make what seems impossible to overcome to be something to look past and look ahead to good things.

    That doesn’t mean that I’m always on the upside. I do my best to stay positive, but it can be a challenge. Those are the times I realize that I need to rely on the Lord more than ever. Back when I was in better shape, I would question how someone could waste their life doing nothing. Now that I have to deal with infirmity, I find that I have a better understanding of those who have no choice but to sit and watch life go by. But for someone able-bodied, living this way when you can be prosperous with your life is foolish. It’s a sad waste of time and talent, and even more, of blessings.

    I still do my best to look at the brighter side. Friends at times how I’m doing. My standard reply?  “I’m doing alright” and then continue with the conversation. Some say I probably wouldn’t tell them it if I were having a bad day, and they’re probably right. What good would it do except to bring others down? That’s not what I want. What I do want is to be productive again. I need to get motivated and keep my mind busy, but it’s hard to do when you’re in constant pain and you can’t stand for more than a few minutes to do something simple like washing a dinner plate without effort. But the encouragement is knowing that I can do them with limits by making minor adjustments, and I keep my complaints to a minimum.

    When I think about it, I’m lying to them at the rougher times and I hate doing that. I live with pain every day, but that’s my life. I can’t let it become someone else’s problem, and I fear that I may drive some people off if I dwell on things.

   Doctor visits are now a regularly-scheduled part of my life. I’m happy that I’m not bedridden and can move about somewhat and though I have limits, deal with them. The fact that I can go to an appointment without the need for a wheelchair is a victory for me,  but there are always reminders that my condition won’t improve and possibly worsen. Maybe they will and maybe not, but what good does it do me to dwell on maybe? There’s no certainty, but hearing that sometimes makes me wonder how worse it can get, but I won’t stay there because it helps me in no way. I’ve read enough to form an idea. I was recently told by my neurologist that what started as Relapsing-Remitting Multiple Sclerosis has transitioned to the Secondary-Progressive phase and could make things more difficult over time. The inflammatory stage is over, which means fewer or no more flare-ups. That seems like a great thing, but nowhere close. The downside is that greater disability can set in. I believe the move from the cane to the rollator and the swallowing issues were the first indicators of my move to Secondary-Progressive MS. My spasms no longer responding to the Baclofen prescribed to help ease them is another. The pain often awakens me from a sound sleep with my leg muscles feeling like they’re pulled tight before slackening and repeating.

    I know Parkinson’s can someday cause me to lose control of my bodily movements. There’s a technique that holds promise for many patients called Deep Brain Stimulation, but because of MS and having lesions on my brain, I am not a candidate for it. So much for hopeful treatments. I’m glad that many can benefit from it, but I won’t be one of them.

    My neurologist once told me that my odd gait is due to Parkinson’s causing my brain to not process signals properly. It’s sort of like my brain being a gyroscope and not functioning at peak. I often sway when standing and I’m always hunched over. He had me walk without the rollator during a visit and called the experience “terrifying”. He also suggested a type of physical therapy specific to the disease called LSVT. I checked into it. The physical therapist assessed my situation and ruled it out citing my lack of stability. I wasn’t surprised. I could barely walk assisted by a cane after my prior physical therapy sessions. I balked at the rest of the exercises and slowly limped to the car. A two-minute walk from the exercise room to the parking lot was torturous and took more than ten minutes. What caused this was the resistance of aquatic therapy. When I gave standard PT another shot, I did well.

    When you’re ailing, so much can go from bad to worse. Like walking on an icy building ledge without a harness, hardship can happen. But, like most things, nothing’s set in stone. If greater problems come, then I’ll deal with them. I have greater things to set my mind on.

    I  keep going back to talking about the what-ifs that come along with life’s experiences. There’s only so much time left in life and then it’ll be gone. I’ll be a memory someday to whoever survives me until they’re no longer there and Patty and I share our names on a headstone. So be it. Better to trust God with whatever’s coming than worry about those things I have no power over. I’ve been blessed in so many ways, and because I’ve seen what God can do, I’d be foolish to hang on to those things I can’t control. I’ve had the opportunity to do things I never imagined possible, so I have no complaints. I’m not depressed, although I’d be foolish to believe that I’m immune to depression. I truly believe that it’s by the grace of God and my faith in Him that I have not fallen into it. When you have a lot of time to think of your situation and dwell on unending pain or the limited potential you’re reduced to, you’re a fool if you’re thinking you’re strong enough to stare depression down. When the situation is at its worst, watch out. If your faith is weak and you don’t have someone there for you to encourage you, then you may be in more trouble than you realize. Sure, my faith is strong, but without the encouragement of Patty and a few reliable friends, I would fear for my mental future

    I won’t lie, I do get discouraged at times. Especially since there’s so much that I can’t do and Patty takes on. She rarely complains, but I hate seeing her carrying the weight. She often reminds me that she has broad shoulders and I don’t doubt that for a moment. With all this baggage, I take comfort that my future is settled in heaven with God’s assurance, His promise of eternal life. With a new home ahead, why be concerned with the distant future? Those things have kept me going, but I know I’m weakest when the extremes come.

   I accept that I may never again feel whole physically, but I am doing my best to keep growing spiritually, and that’s much of what keeps me going. There will always be room for improvement. A personal walk with God is what gets me through this life and I’m confident it will carry me through whatever’s coming. Those worries can stay locked in my mind’s footlocker because they’re no help to me. I’d rather be walking with God and know that He’s carrying me through life when things are too difficult. After salvation, that’s the greatest comfort of all.

    I’ll be okay. I may have to deal with more than I ever imagined, but I’ll be fine. My hope is that everyone could view things in the same way, but I know that we’re all different: you, me, and everyone else. We’re not clones and we don’t see or react the same way. Most importantly, what and Who you rely on are what will help you through life and guide your way. Who are you relying on? Who gets you through the day? Through life? I hope that I’ve provided the evidence you’ll need to make a sound decision on your future; that some things will satisfy you, but that it’s God Who you’ll find to be your sufficiency. Stack them up and see if the things you look to daily are keeping you afloat or if they bring you to rise above whatever you’re facing. If you’re going it alone without Jesus Christ, I hope that you’ll find Him to get you through the present and future and to look past what’s already done. The past things are those you’ll never be able to change, but ones that our Lord can and will forgive for those who believe. Look to the future, look ahead to Christ. May you find peace in Him, even today.

 

THE END