I need more Time- Part Deux

OK, well, now that I have depressed everyone…

I wasn’t planning on writing a second part to the illness story, but with such a reaction, I feel like I need to clear up a few points and expound on some others.

Since the last post, I have received a number of calls and emails of support and compassion, and many people have shared their similar experiences. It’s nice to know there are others out there as miserable as I am. Misery does indeed love company. Now get off my lawn! Seriously though, thanks to all for the goodwill.

Me in the shower every morning once people stop caring.

And let’s be honest here. I don’t want people to really stop asking how I am doing. Left on an island of insecurity and desperation, I would become even more of a psychological mess the likes of Nicolas Cage in Leaving Las Vegas, Robert De Niro in Taxi Driver, Klinger in MAS*H, or Lindsey Lohan in her real life. I don’t want to end up like a beggar on the street who, instead of holding a cup for money, would have a sign saying I AM SICK! and have my arms out for hugs and attention. People would drive by and see me standing on a corner and say, “Oh look, there’s Dave Mainelli. So sad isn’t it. I’m surprised he is still alive actually. Uh-oh, don’t look,  he’s staring over this way. Just act like we don’t see him. Oh god, now he’s coming over. Just go, go!”

Important point What I was trying to say is that it gets hard when it goes on for so long and people are forced to ask, ‘How are you feeling’ and I am forced to respond, ‘Like hell’ on a daily basis. So if I don’t seem excited to talk about it, trust me when I say that it isn’t you, it’s me.

Oh and mom? Don’t you dare stop checking on me. Who else would I tell the truth to outside of my house and really complain to about all those weird things that happen? When other people ask how I am, I try to sprinkle in a little hope and optimism, maybe a Happy New Year or Shalom, and bad jokes about my impending doom. When you ask, I am being serious about that doom. And the shalom.

I also know full well that there are many, many people who have it much worse than I do including many of you, and I really do try to remember that daily. I have some fair days and good streaks that allow me to be a part-time functioning person out in the world. That is lucky when compared to the other side of the line.

One of the fun things that happens though, and I left this out last time, is when people see me and they are surprised I haven’t turned into Tom Hanks at the end of Philadelphia or Keith Richards on any day. I hear, You look great or You don’t look sick regularly. When I am really sick, no one sees me, and I guess that’s the illusion. And most of the symptoms don’t exactly “show.” The list runs like: migraines, fevers, night sweats, lymphadenopathy pain, neuropathy in my legs, strange bruises, fatigue, nausea, and my latest and greatest onset; my tongue is shredding. Yea, I know. Huh? And they don’t know why yet. One of my doctors who is a Lymphoma specialist, said I am a Hodgkin’s Lymphoma Profile without the cancer. In which I replied, “And that’s good, yes?”

But while I have somewhere around ten to twelve symptoms coming and going all the time, I didn’t get the weight-loss plan that usually comes with these types of illnesses and for that I feel a little cheated. I mean, what’s a guy gotta do to lose some LBs? I suffer through all the other stuff, can’t I have one positive outcome from it?

Speaking of which, my daughter, Casey, told me the first post on the illness, I need more time- part one, was depressing. I intended for it to be a bit edgy and funny, and more of an update of what has been going on with me. I get a lot of people who tell me they hear things but don’t know what is going on. But I may have gone a little negative last time, and it got me thinking that there had to be more positives to the experience.

So, for those of you keeping score at home, here is my list of pros and cons of having this unknown illness: 

Very funny

Very funny

Pro:  No shenanigans were going to happen in this house with me home all the time during summer break.
Con: No shenanigans happen at this house.

Pro: No alarm in morning.
Con: I can stay in bed for days at a time.

Pro: Less driving by me so less gas used.
Con: Three cars and three other drivers means some days no car for Dave. Not that I need it when sick; it’s just when the driveway is empty, I really feel isolated.

Pro: I hear from friends via email, phone, and text.
Con: My friends do things without me like all the runs, cultural events, attend games, go to music shows, play sports, and go to dinner and the bars.

Pro: More time to make fun of my two younger brothers through texts and emails.
Con: No con here really. That is pretty great. 

Pro: I watch every golf tournament on TV.
Con: I haven’t played golf since September of 2011.

Pro: I am in the MFA for writing program at UNO.
Con: I can’t play hoops in the driveway with my son like we used to do all the time.

Pro: I watch movies with my daughter and we spend some serious Quality Time together.
Con: That is usually only when she is grounded.

Pro: Showering is an option.
Con: What’s that smell?

Pro: Dog time. As in backyard and sleep.
Con: No long runs or walks or park time with them.

Pro: I can work on novel.
Con: It is too hard most days to play music with headaches and no energy.

Pro: My medical knowledge should be close to some kind of degree by now.
Con: Too many needles and IVs.

Pro: Lots of time for Fantasy Football Team.
Con: Way too much use of the waiver wire.

Pro: My wife has stuck around so far.
Con:With 3 back surgeries and this dumb thing, she may be pushing me around sooner than she expected.

Pro: I read a lot.
Con: I have an unknown illness.

Not yet

I found this on web.

dM

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  3 comments for “I need more Time- Part Deux

  1. deb mainelli
    November 6, 2013 at 9:36 pm

    Like you could stop me from asking….

    Like

  2. November 7, 2013 at 12:03 pm

    Keep fighting. Stay strong, and may light and love be yours and your families. And keep writing.

    Like

  3. Rhett Wooten
    December 5, 2013 at 9:04 am

    You are a neat guy Mr. Dave. World could not do without you. Love you Brother. Rhett

    Like

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