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.

 

The long ride home

The windshield wipers keep rhythm as I adjust my seat forward to make sure I stay awake for the drive home. The heater is on high and I’m still cold. The hot coffee in the holder next to me is calling my name but I’m fixated on the double yellow line, all senses working overtime to get home safe.

This is just one more in a series of post-hospital visit rides home. I’ve done so many that they have become a ritual. I review in my head the events of my stay, even those leading up to it, evaluate how productive it was and ponder the next step. This ride is unlike the others, I am not as optimistic about a positive outcome as usual. In fact, I have a very confident feeling that I will be back in the hospital soon. I’m not being negative, I’m just being honest with myself.

Like the yellow line in the road, the events of the past few days are a blur. Thursday morning I drove to a follow-up appointment for my ongoing pneumonia. To say that I felt like crap is a huge understatement. I arrived 20 minutes early and it took me 15 of them to muster the courage to walk a hundred yards to the front door of the medical building. The heat emanating from the vents in my truck was warming and sedating me, the thought of walking through the freezing rain that was hiding my Spring seemed a daunting task. I finally got out of my truck and made the walk. By the time I got to the front door, I was done, bent over and gasping for air. People were staring. I walked slowly to the elevator and tried to compose myself.

I checked in and waited patiently to be seen. I wouldn’t be seen for 20 minutes but it didn’t matter, I fell asleep in the waiting room. When my doctor came out to greet me, a mere ten minutes elapsed before an ambulance was called to move me to the nearest hospital. 2 hours later Dr. Quackadoodle MD decided that because my vitals were ok he would ignore all of my Dr.’s notes and send me home as healthy. Discouraged but not surprised, I have always been a medical enigma, I prepared myself to go home. Then a cute as hell nurse came in and said she was moving me to X-ray. I wasn’t sure what had changed but I went with it. Once my X-Ray was reviewed Dr. Quackadoodle MD decided that I would be admitted. Pneumonia in both lungs. DuhWhat do these people think, that I’m here for fun?

The next 4 days would consist of what has become a familiar pattern. I was told about my declining kidney function. No shit… read my chart. I would answer the same questions about my medical history over and over again. Once again read my fucking chart. I would talk to sub-par doctors who knew less about my condition than I did. My repeated requests for them to consult with my Transplant team would go largely unheeded. After several days of antibiotics, surprisingly good hospital food, too many naps and far too much television Monday rolled around. I asked my nurse on her morning rounds what progress I had made and to speak with the doctor on duty. I wanted to know what the plan was. Five minutes later, she relayed to me the doctor’s words…”Do you feel well enough to go home?” What kind of bullshit answer is that?! I wanted to discuss blood counts, creatine levels, a second chest X-Ray to see if there has been a change…not assess myself! No, I don’t feel that much better. Walking back to bed after taking a leak has me sucking wind, that is not progress. It was explained to me that my blood counts had improved and that pneumonia has no real treatment regimen except rest and antibiotics which can be accomplished at home. Good enough I guess, get me the discharge papers.

My takeaways of the visit flash in my mind like the lights of the passing cars.
I’ll probably be back in the hospital soon. Brace yourself.
I received some amazing care from the nursing staff. While I wasn’t thrilled with the doctors, the nurses and aides were great. Caring, nurturing, and professional as well as sounding boards for my lame Dad jokes, they made my stay easier.
I am grateful that my oldest daughter drove 50 miles and picked up my youngest daughter to come see me. Their support was much needed and appreciated.
I am a little perplexed that my youngest son didn’t even text me. Perhaps my years of trying not to worry them have succeeded with him, I’m not sure how I feel about that.
It was the first time my wife wasn’t bedside arguing with my doctors. She was working doubles all week and she’s now my ex-wife. Things have indeed changed.

I arrived home around 7:30 and hopped in the shower to wash the hospital off of me. The activity and steam winded me to the point that I had a coughing fit so violent I vomited in the shower. Hanging my head in the shower, as I hung my head in the ER so many days ago, the only words I heard were those of Dr. Quackadoodle, of the distinguished medical practice Dewey, Not listen, and Howe saying “Do you feel well enough to go home?” reverberating in my head.  Yea, sure. I really wish I had handled that better. I suppose I can address it the next time I’m there. The way I’m going how long can that possibly be?

I’m not feeling bad for myself, I’m just feeling bad. This won’t last, I will feel better at some point, I have to. My posts will be more positive, I promise. This is my process, put it to paper and then put it in the past. Soon, if it is meant to be, the good days will again outnumber the bad.