A year has passed…

Sunday, September 23, 2018.
I awoke at about 9:30 PM. My chest hurt. I carefully felt the taped area around the plastic port in my chest. It was tender to the touch. I went to the bathroom mirror and pulled down my shirt to look at it. What appeared to be a pimple next to my port caught my eye. I squeezed and popped it. Immediately, I was overcome by the most powerful chills I had ever experienced. I began to shiver to the point of quivering. My teeth were clacking. It was miserable. I went downstairs to my recliner and threw the biggest blanket I could find over myself. The trembling was uncontrollable. Finally, I warmed up enough for the chills to stop. I braved the trip back upstairs and I curled up under the blankets, freezing again. After 10 or 15 minutes I managed to make it stop and remained in that position until morning.

Monday, September 24, 2018.
I spent most of the day under a blanket but I managed to get downstairs and eat something. I felt awful. Mom was concerned but knew that if I needed help I would tell her.

That evening I was worse. I was curled up on the spare bedroom bed in the fetal position under 3 blankets when Mom came in and asked if I felt well enough for her to go out for a few hours.
Take me to the hospital! raced through my brain. Stupidly I instead said,
“Go ahead, I’m fine.”
At some point I made my way upstairs. I was feeling worse. The tremors were nearly uncontrollable. I crawled into bed. I vaguely remember soiling myself but I didn’t get up. The thought of getting out from under the blankets, my only salvation, was unbearable.
Call 911, you’re going to die! my brain screamed at me.
I don’t want to move, I can’t. If I die I die, a voice answered back. It’s over.

Tuesday, September 25, 2018
“Bill, wake up! You’re going to be late for dialysis!” I heard my mothers voice faintly. It took me a moment to realize she was at the base of the stairs. I looked around, I was on the bathroom floor. I forced myself to my feet and then immediately collapsed. At the sound of my crashing to the floor she raced upstairs. Mom assisted me to the bed, all the while asking me if I was ok, if I was able to get up and get ready. I answered her by falling forward and landing again on the floor. The next thing I remember was being hoisted off of the floor of my bedroom by two heavy firefighters. They needed my help to get me onto the stretcher. I had nothing to offer. They picked me up, placed me onto the stretcher. My arms flopped lifelessly from both sides of the stretcher as they struggled to get me down the narrow stairs from my loft.

I was brought to a waiting ambulance. I vaguely remember the chirp of the band radio in the ambulance, being asked a bunch of questions, having my soiled clothes cut off of me, the bumps of the ambulance banging around the bumpy side roads, some commotion as I was treated and begging for a blanket. I was cold. So very, very cold…

To be continued…

Do it now

Tuesday the text came through from Charlie. Charlie is the guy I bought my motorcycle from and we became friends and riding buddies.

We had a cancellation for Lake George this weekend, you in? We leave Thursday.

The Lake George Trip! He had mentioned this to me. 4 days of riding motorcycles and a huge car show. I was excited. Then I thought about it. I came up with about 50 reasons why I should say no. Some were legitimate, like missing 2 dialysis sessions was a big one. I texted him back and told him I couldn’t make it.

Then I thought about it. I didn’t even try to see if I could make it work. Had I even tried to change my schedule at dialysis or try to schedule an appt in NY? Apparently a year of Dr’s Appointments and a rigorous dialysis schedule had almost stolen my spirit. Almost. I texted Charlie back and told him that I needed until the next afternoon to decide.

The next morning I went to my clinic and sat down with the nurse manager Karen and told her that I had an opportunity to do a real bucket list thing and asked for her help. Within minutes it was agreed that I would come in the next morning at 6 am (as opposed to noon), skip my Saturday treatment and do Monday and Tuesday when I get back. Bada Bing Bada Boom. I was all set. I called Charlie and told him that I’m in. He was happy.

That afternoon I packed everything I would need for the trip. Rain gear, clothes, tools and snacks were loaded onto the bike. I had already polished her and topped off the oil. She was ready to go.

As luck would have it I didn’t sleep for a minute that night. I went to dialysis at 5:45 hoping I would catch a nap there. No such luck. When I left at 10:15 I was dead tired. I briefly entertained the notion of Chumping out but I didn’t. I got home, parked the truck, fired up the sled and drove an hour to meet Charlie. I had committed myself to accomplish this trip.

to be continued…

Touching the moon

“Closer”, the father said to the boy.
The boy dutifully moved to his father’s instruction. “Better?”
“Yes, now stand on your toes and reach as high as you can.”
Again, the boy obeyed his father. “Am I touching it?”
“Yes, son. You are.”
There was a audible click as the camera snapped the photo of his index finger touching the full moon that he and his family had been admiring at the end of a wonderful family day on the beach.

For a short, magical time the boy actually believed that he had touched the moon. After all, there was a picture in the family album of it. But eventually he realized that it was only an illusion.

Many years have passed. Now an adult, he sat on the wall of the beach at low tide and looked longingly at the sky. It was his favorite spot, it made him think of his father who was long since deceased. He dwelt on the notion of happiness, in particular the distinct lack of it in his life. This spot represented the best time of his life. He stopped short at actually saying happiest, he had always believed that he had never achieved “happy” in its truest form.

Especially lately. The young, spirited and curious young boy that had grown into a bright, artistic if not aimless young man had married a woman that he thought he loved, but their life together was tumultuous and ended badly. He emerged from the marriage broken and disillusioned man. What his marriage hadn’t robbed him of was consumed by his illness. But he had one trick up his sleeve, his only one, his ability to put on a “happy”(there’s that word again) face and along with his already perfected “optimistic” face and his proven “I’m fine” face, his gallery of feigned emotions served him well for a very long time.

Until now. Although he could never recall being happy, he knew what it was and knew he didn’t have it. He had come close to it several times as he enjoyed the wonderment of his young children. Other than that, he felt that he was a stranger witnessing his life through a looking glass. Close enough to be there but just out of reach. It would have been bad enough to feel like a stranger in his own world, but it had metastasized. He was now a truly joyless creature.

He reflected on his new existence, courtesy of the recent events of his life bestowed upon him by his now life-consuming chronic illness. He wondered when the social extrovert he was notorious as became more comfortable being alone. When did his body become so weak that it immediately dismissed his (still) sharp mind’s desire to do things? When did he become the guy who stopped making plans because he knew he would probably cancel at the last minute? He wondered why he goes to bed early to rest up for nothing, to then get up early to get ready to go nowhere? When did he stop hoping that the next day would bring better things, a miracle of sorts to end the nearly endless cycle of clinic sessions and Medical appointments? Short of stopping to pat the head of a stranger’s dog, he rarely even smiled anymore.

He was sick and tired of being sick and tired. Tired of being strong for everyone and draining his precious remaining energy in the process. Most of all, he was exhausted from making a fake smile and telling those that loved him that he was ok and that things would get better. Only one person was being strong for him. And she was so far away. As far away as the moon.

He hadn’t noticed that the sun had set. He had brooded throughout the very sunset that he went to witness. In the sun’s place stood a magnificent full moon. A moon so bright that it boldly stole the sky for its own glory.

He recognized a metaphor in his musings and the beautiful coincidence of a full moon just like the one his beloved father had photographed of him at this very spot when he was a boy. The moon was just like happiness. He could see it, feel it, admire its beauty. He could even reach with outstretched hands and appear to touch it. But in reality, the cruel harsh mistress that she was, both were in fact light years away and the appearance of touching either was just an illusion.

Badge of honor

One of my favorite things about Christmas shopping is buying the occasional trinket for myself. I can’t help it. I only go in stores once a year so it makes sense that I would find things that I like, right?

This year is special. With the successful Disability claim I finally have an income. It’s a meager one but it’s something. It killed me last year to go into birthdays and holidays with no means to give gifts. I am a generous person by nature and I never go anywhere empty handed. My family understood, but it didn’t make me feel any better. This year I hit the stores.

I live 45 minutes from the nearest shopping center. I try to limit my visits to days that I do dialysis which is nearby. But this week I have gone in every day. I have been working closely with the Social Worker at the dialysis center on my ongoing Insurance issues. She is very knowledgeable and incredibly helpful but is only there on my off days. Therefore it’s taken all of this week to get to get it right.

Yesterday after Dialysis I went to get something for my mother. As I was walked by the Jewelry section a shiny object caught my eye. A Superman pendant. I wanted it. Now, if you know the name of my blog then you can see why this caught my attention. If you know the back story of why I named my blog as I did then you will further understand. I looked for an attendant but none were available. Alas, I was tired, wanting to get home so I left, knowing that I would be back today.

This morning I showed up at the dialysis center to find that the Social Worker wasn’t in and wouldn’t be for several hours. I decided that I would stay in the area and come back later. It was too much of a drive to go home and then come back. I went to get an oil change on my truck, did some food shopping and went back to the center. She was still not there.

I went back to the store. This time there was an attendant at the Jewelry counter. I asked the lovely red-head (my favorite…Grrrrrrrr)
named Ginger of all things to take the pendant out so that I could look at it. The price caused me to spin on my heels until she mentioned the word “discount”. Discount indeed, by the time she was done I bought if for 1/3 of the asking price.

As Ginger was ringing it up, she looked up and asked “any significance to the pendant?”
“Do you mean to say ‘why is a grown-ass man buying a Superhero pendant’?”
She turned a little red (pun intended), “No, I was just wondering if there is a story behind it.”
“There is, actually, but I don’t want to bore you.”
“Bore away”, she said, “It’s a slow day.”
I explained that I had a blog. About how my wife had derogatorily nicknamed me Superman because she thought I was so stubborn and hard-headed and invincible. I explained that being chronically ill, it helps me to wear the badge to remind me to be strong. She hung on every word.
“What’s your illness?” she asked.
I told her. She had a cousin that was on dialysis. I told her that I was as well. She told me that he was about my age, 46 or47. I told her that I was 53. She didn’t believe me and also told me that I look pretty damn good for a guy on dialysis. I told her that she just made my day.

She offered to box it up. I told her I would wear it out. She laughed. I walked out feeling like a man of steel.

Later, at the center, I resolved my insurance issues. As I stood up my pendant fell out of my shirt. The Social Worker commented.
“Nice pendant. Like your blog,right?”
Apparently the one Nurse that I showed it to spread the word. Not a bad thing I suppose.

I may find myself working my way back to the store to see Ginger again. After all, I do so love a redhead.

A blessing in disguise

A very dear friend, a fellow blogger with a chronic illness (you know who you are) once told me at length how her illness was a blessing.  She spoke of being grateful, of appreciating the small things in life and of not wasting precious time. I wholly agreed with her, but I stopped short of calling it a blessing. 

Now, I’m not so sure.

My illness has made me a better person, there is no doubt about it. I feel comfortable in my own skin for the first time in my life.

My blog has always been a labor of love. I started it as a means to tell my story and to vent my frustrations. I vowed to not dwell on the negatives, there were a ton, but to matter of factly talk about my life. Like my social media account, I made a real effort to be positive. No complaining, no placing blame for my situation and zero anger. Many have said that I have inspired them, that I am a good person. I suppose that I am a ok person now. But to be fair, I wasn’t always.

I would never go so far as to say that I was ever a bad person. Instead I would describe my former self as deeply flawed. I used to be closed off. I was angry. I often resorted to pettiness. I was jealous. I blamed others for my lack of success. I tried to be something I wasn’t and did a lot of things I am not proud of.

When I got married and started a family I genuinely wanted to curb some of my bad habits. I wanted to cut down on my drinking. Eat healthy. Be more loving and open. To lose my anger. But it wasn’t to be. Marital strife, financial issues and career challenges dominated any attempts to be a better man. My illness, particularly the hypertension that often bordered on out of control, combined with a drinking problem resulted in a horrible temper and some outbursts that I would give anything in the world to unwind them. I fought with my wife and said terrible things in front of my children. I would get mad at the kids if they took sides or interjected. My oldest daughter and I had horrible arguments. As tough as she was, I was failing her. I failed to recognize that I needed to be the adult. But my version of an adult was an angry, sick, disappointed and frustrated version of the man I wanted to be. Then one night I had a transformative moment.

After a particularly nasty argument with my oldest daughter I went to bed angry. I hated myself for the things that I said. It was truly unforgivable. Somehow, despite my raging blood pressure and self-loathing I somehow fell asleep. What happened next changed my life.

I dreamt that I was watching my daughter through a pane of one way glass. She was in jail, or a mental institution, I’m not sure. At the time of the argument my daughter was 12. But in my dream she was about 3. She was in a room, alone. I was watching her play with blocks. Her hair was pulled up in a tiny ponytail, she was wearing the cute stretch pants that I loved when she was little. She was intent on the puzzle, silent and sad. I somehow had the knowledge that she would be in that horrible, cold and loveless room forever. I pounded frantically on the unforgiving glass for her to hear me, to see me. For the opportunity to mouth the words, as late and fruitless as they were,
“I love you!”.
“I’m so sorry!”
“Please forgive me!”

She continued to listlessly play with her blocks.

I awoke in a cold sweat. I was crying. I did not fall back asleep that night.  I was haunted by it for weeks. It still bothers me. For weeks and months I hated myself. It was then that I took a long, hard and brutally honest look at myself. I acknowledged my illness and made a real commitment to address my shortcomings. I knew I had to curb my drinking, my anger and mend my relationship with my daughter. By reconciling with my mortality, true healing began. I felt urgency to work harder. Most important, I committed myself to positive change.addressing my shortcomings. 

I am happy to reveal that my commitment to repairing my tumultuous relationship with my daughter paid off. We get along wonderful now. Despite no apparent issues with my other 3, I know I formed a much better relationship with them that wouldn’t be possible if I hadn’t been honest with myself. It inspired me to fix the other areas of my life. 

The true catharsis occurred when I received a kidney from a co-worker. Her altruism changed my life. I received a humongous lesson in gratitude. Which resulted in a pay-it-forward attitude that I have yet to lose. I became charitable, if not with money I offered my time which is more valuable than any financial offering. By diving into charity, tapped into a well of empathy and caring I didn’t know I had. It made me a better husband, father, son, co-worker and friend to all. 

I think we all look at our lives and think that we have about 80 years on this planet, more if you are lucky. It allows us the luxury of putting off things until “later”. Chronic illness puts a serious damper on the notion of later. This realization changed how I did everything. Before my transplant failed I had one time frame on my mortality. After, I had a much different, and shorter one. Later may be too late. 

Chronic illness has caused me to be the man I always wanted to be. I owned up to the fact that it’s ok to walk away from a fight. To forgive those that wronged  me. To ask myself if I’m right before I shoot my mouth off. To be nice in place of rushing to judgement. To let things go. To be kind and open to the struggles of other. It led to my life-guiding mantra of knowing that there is no value in self pity. Someone always has it worse.

Today I walk upright, true to myself and others. I try to give as much as I can of myself to others. I think of my funeral, whenever it may be. How I will be remembered matters to me. I want to be remembered by those that matter to me as a good person. This is an attitude that is lost by many in their pursuit of wealth, power and prestige. I have lost all of those things and in the process gained a unique viewpoint.

If i were to live 100 years as the man I was, I would never achieve the clarity of mind and comfort in my own skin that I have now. I thank my illness for this. I know in my heart of hearts that my illness made me a better man. Not perfect, but better. 

That, my friends is indeed a blessing.

Perception vs. Reality — MSich Chronicles

Have you met Steve? If not, you should. I challenge you to read this post and not “follow” him. This is the attitude that we all need to have, one that those with chronic illness can teach all of us if we open ourselves to it. It will definitely influence the way you look at others when you pass them on the street.

 

“I wonder what people think when they see me.” That was a common refrain of mine once the symptoms became entrenched and my mobility became compromised. I was never one who liked to stand out in a crowd, preferring instead to blend into the background. MS made that impossible. My inability to walk in a straight […]

via Perception vs. Reality — MSich Chronicles

The Fortress of Solitude

Many years ago my Manager, in what may have been the most unprofessional incident by a manager towards me in my career, attacked me about my Facebook content. Our company did not use FB, he himself did not have it but his son was on it one day and my boss asked him to pull up mine. The following Monday he went up one side of me and down the other because I belonged to some Conservative (no I am not a Nazi) sites and I posted some political stuff. He thought that it was inappropriate and tried to link it to my professional life, which was an unfair and inaccurate assessment. We argued heavily, he was way out of line. When I got home that night, I took a moment to peruse some of my FB activity. While I still didn’t agree that I had a toxic presence online, I realized that it certainly wasn’t a positive one. I chimed in on questionable posts, I made a lot of bad jokes, I argued with a few hard-headed idiots that were better left non-engaged. I could do better. I decided at that moment that my online presence from that point on would be positive or nonexistent. No more negativity.

This principle applies to my blog as well. From the beginning, I have posted some very personal and graphic details about my life but I never did it in a negative, whiny, or complaining manner. I will tell anyone anything about me but the LAST thing I want is for someone to feel bad for me. Therefore, my posts are never done to elicit sympathy and when they read like a Sylvia Plath poem then it is time to re-evaluate my mindset.

That’s why I have been away for over 2 weeks. I have been way South of a positive place.

Here is a matter-of-fact breakdown of what has been going on.

Superman has been hiding out in his fortress of solitude. It is an unfortunate pattern I follows when life gets too much. I close myself off from the world. It’s not hiding, it’s preparing for the next step.

I have been sick for the better part of July. Not necessarily “praying to the Porcelain Goddess” sick but as far as Renal disease symptoms are concerned I hit the fucking jackpot. Massive muscle cramping, nausea, fatigue and brain fog. I spent the better part of 2 weeks on the sofa, napping intermittently during the day, restless and sleepless at night. I lacked the energy to set even one meaningful goal per day. To make matters worse, I had scheduled surgery on the 17th to install a new fistula (a vascular port on my arm) in preparation for my upcoming dialysis. They also surgically closed off my old, failed fistula. It was day surgery but very painful. So painful that I couldn’t type for about ten days.

I had the house to myself for the week immediately following my surgery and I can only describe it as a sofa-bound blur. I had visits from my oldest son and his best friend and my oldest daughter over the course of the week and I was so happy to see them but too sick to show it. I could barely get off the sofa to say goodbye when they left. It saddened me that I was unable to maintain my usual cheerful. albeit false demeanor. Of course nothing saddened me more than the scared look my kids had on their faces. They tried to conceal it, but they were shocked at my sudden deterioration. I had now had enough, I was sick and tired of being sick and tired. I called my Nephrologist and asked to be evaluated.

Friday I got the call. I am in need of dialysis. Immediately. This week will be a week of information gathering and planning. I am not looking forward to it. I’m anxious and a bit nervous. But it is my future and it is time that I face it.

On the positive side, maybe I’ll feel better.

See, I ended on a positive. I don’t even know how I did that.