I need more time – Part One

Going through this illness has been mentally, emotionally, and physically exhausting for not just me, but my entire family. I am sure my friends, colleagues, and extended family grow tired of asking “How ya Feeling?” every time they see me, hence, the name of this blog. I know I get tired of them asking it. They are only showing their concern. But try being asked by at least five people everyday for two years and see what it does to you. It wears you down because you can’t get away from it. If it’s not beating you up, it’s making others remind you that it could beat you up if it wanted to- like a bully on the street corner or one of the Five Families of NYC mob lore.

I feel so bad for my kids. On the days when I am really sick, they see me lying in bed in misery when they leave in the morning, and then find me in the same position when they come home. If it goes on for a few days, they will start to check on me more, see if I need anything, or maybe lie down with me for a bit. Not too long mind you – they are teenagers but long enough. It has to be hard to see their dad like that.

Then my poor wife has to leave for work some mornings as I writhe in anguish from a migraine or painful attack of a flu-like malaise. She knows not to call because I won’t answer, and then she worries all day long. I usually get a text message late afternoon asking how I am doing. It has to be fun for her when I don’t respond for a few hours because I am asleep. She might install a live-feed in the bedroom for those days just so she can occasionally check to see if my stomach is moving up and down.

Customers and employees are always asking Tiff how I am doing at the restaurant. I’ve known some of them for 20 years. The customers knew me as someone they could talk to, swap some stories with, show-off their grand-kids’ school pictures to, and complain about the game with. To the staff, I was their college adviser, their bail payer, the guy they laughed with or at, the one who fired then rehired them, and the jerk  who made them cry. The constant inquiring makes it hard on my wife as she has to survive the daily barrage of “How’s Dave?” We joke that she should wear a shirt or a button that says something like; “Dave is the same. I will let you know if anything changes.”

No one is doing anything wrong. That is partly why it is so frustrating. They are being good souls and asking about me because they care. It’s hard to explain, but it feels embarrassing, like I should be better or dead already. “Still?” is a common reaction.

And of course, everyone wants to diagnose me. They have personally had or know someone or saw something on Animal Planet or Grey’s Anatomy or House once, or they read about some illness or virus or cancer in Leviticus as a punishment from God. Sometimes, the suggestion sounds quite a bit like what I am going through. So I go through the same game of reading up on it, emailing my personal doctor about it, asking my treating doctor about it, (Have you ever heard of Daffy-Duck-beak-being-shot-off syndrome?) maybe even testing for it, then finding out it is not it. It is such a roller-coaster ride. But the worst part of the ordeal is when I have a good stretch and I think that I am getting better. The psychological double-bind of wanting to get better, but not wanting to feel crazy keeps me from celebrating. Then I get really sick again and I just want to get better again. And so goes the cycle.

Going through a number of tests for deadly diseases and cancers gets you thinking, especially while you are lying in bed feeling like you actually might be dying. I have had nights where I didn’t sleep because I was putting my life in order and deciding who would inherit my ties, my Stevie Ray Vaughn pictures, and my college loan debt. And to you, Mr. Hood, Dave has left you these loans at 4%- congratulations. Then at some point during the wait for the test results (why does it always seem to happen on a Friday so I have to wait until Monday to hear?) I start to get angry. I don’t want to die. I have so much I still want to do. We finally hear back on Tuesday, because the nurse forgot to call Monday, that the leukemia test was negative, but only after misplacing my folder and not realizing it until after she called. Let me see here… sorry, I had it right here in front of me a minute ago. And would you believe, that after two years of this b.s., there is always a hint of disappointment when results come back negative? I found myself really rooting for Malaria, and was even a little disappointed when the Hodgkin’s results came back negative for the sixth time. You just want to know.

There is no question that I have lived a wonderful life if it was to be the end. I have been to many places around the world and the United States, and I once spoke at a conference in South Korea to 600 people in front of government figures and medical professionals (No not in Korean). I owned two businesses and saw  both success and failure. I married a great gal and raised a couple of good kids. I played lead guitar in a thrown together band in front of a couple thousand people- twice. I played a two-hour acoustic show of all my songs in front of a couple hundred people, wrote a song for a friend’s wedding, and played piano at another. I did the sports thing up through high-school and went to plenty of pro and college games in all the big sports including Yankee Stadium three times and a high-school rugby game in New Zealand. I finished in three sprint length triathlons, coached my son in basketball and my daughter in volleyball, and have a hole-in-one. The list is long, and I have been very fortunate. I know.

But I have more to do, more to learn, and more to give. In other words, I’m not ready to leave.

I still have to:

watch my kids marry and have kids; skydive; bungee jump from the Auckland bridge; summit Aconcagua; live in Florence for a year; camp a couple of nights alone on the island of Alexander Selkirk; finish my MFA in writing; bring my family on the BC Ferry to Vancouver Island; see my wife find her passion for the second part of her life; walk through the Louvre; take the family to Australia and New Zealand; see my novels published and write a new Great American Novel; see the Iguaza Falls in Brazil; model nude for an art class; safari in Tanzania; spend a week in Banff at Fairmont Banff Springs; finish learning Italian; take son on zip line in Costa Rica; sell a song to a big-time act; live in an RV around the country for a year; kill a mountain lion during open-season in Nebraska; teach a creative writing class; record a studio length album; catch a shark; and drink a cocktail with my daughter in Manhattan just to name a few.

They are not achievements I only wish to do. They are what I will do if I am fortunate enough to receive more time and better health at some point.

Everything can change so fast. I know all the clichés about not waiting to act are easy to ignore. We all do it. Well, I am here to tell you, do your best to find ways to live your life the way you want to. Ask yourself what it is you want to achieve, then work towards it starting now. I don’t plan on going anywhere, but it sure has had me thinking. The more we wait- the more we won’t.


Published by Dave Mainelli

Small business owner, former International franchise business consultant, musician, father, husband, and writer. Served on the B.O.D. for Red Hen Press and Fine Lines Literary Magazine, an MFA in Writing from the University of Nebraska, and a teacher for Wayne State and Iowa Western. A short story collection, 'How To Be Lonely' due out January 2021.

33 thoughts on “I need more time – Part One

  1. Dave, had no idea you were going through this. Really hope thongs get better for you and your family. I can do without the nude modeling should you pull through, but I’m still rooting for you to make it, even at the expense of some poor mountain lion.


    1. I was wondering if I would get shit for the mountain lion! Something about hunting a lion – I don’t know. And NE just made it legal. I will make a promise that I will only kill if in city limits. 🙂 Thaks Mike. It has been so dumb. Just a million tests with the lump sum being auto-immune illness. Appreciate the encouragement. Hope you are well! oh – and thanks for reading.


  2. Wow Dave…great articulating. I was hook line and sinker until the modeling nude:) keeping me on my toes as a reader. Thinking about you guys!


  3. Dave, I read with earnest each and every word. Anyone who has – or had a loved one – wait for a diagnosis or answers will truly feel the heartfelt emotion of your experiences. One shouldn’t be able to go through their day without your words burning empathy into their hearts. BTW – I support your ambition for a nude modeling career. Best!


    1. Judith – what a delight to hear from you. You would know so well. I try to keep the perspective of being luckier than those who are facing much tougher circumstances, but every time I go down, I get a little more frustrated. The art model is going to have to be with total strangers in a small village somewhere I think. I hope you are well… dM


    1. Thanks Schaef. Old-timers game is a definite must. But alas – the old MOQ blue gym was just updated. How will you win without blinding your opponents for the first quarter and a half? And only if we bring back the coaches too! O’Dougherty and Schaefer for one last hurrah. We can turn it into an annual home and away series. As soon as I can. I will avenge the MOQ curse, in this life or the next.


  4. Dave, this describes years of my life. You captured the sense of frustration and futility so well. I hope you get a clear diagnosis soon. I was so relieved to be diagnosed with Celiac Disease because it meant I want crazy. (And it can be managed.) Don’t give up. ~Heidi (MFA Writing)


      1. If you haven’t been tested for CD, check it out. Autoimmune diseases layer on each other when untreated. It can present so many different ways and is so much more common than once believed. Take a look at csaceliacs.org. Might change your life!


  5. Hi Dave!! I’m inspired to create my own “list”…it probably
    won’t be as ambitious or adventurous as yours though!
    Prayers of peace and relief to you and your fam and special
    prayers for your doctors to discover an accurate diagnosis.
    Big smiles,


  6. Woh Dave, I just only met you on my 24th birthday in Omaha NE which we cellebrated together with HI. What a inspiring story, how though to deal with every day.. Wish you & your family all the best


  7. Dave, I love the blog. I thought I told you to stay away from the White Russians….I am currently hiring live models for a drawing class in SD let me know if you are in the area. All the best.

    Jake Wilke


    1. Oh my goodness, that is fun. And yes, It is true – a group of white Russians tried to kill me in Jamaica once. Milk was a poor choice. I will let you know next time I am in San Diego. Sandiegoans? Sandiegoites? Sandiegans.


  8. Dave, I love the blog. it’s good to know where you are and how you are doing. Having Multiple Sclerosis myself, I understand much of what you’re saying about the toll that a completely unpredictaable illness can take on you and those around you. Your attitude about the things you are going to achieve is very inspiring to me. I might have to come up with my own list. No bungee jumping or nude modeling, though. Kelli


  9. Thanks for sharing this. I don’t feel so alone after reading this. I share your frustration – I am in the midst of a long wait for answers (symptoms much like what you describe) – but currently suspected as a low grade lymphoma. Wishing you the best in your journey, and some answers and healing.


  10. God bless you and your family Dave. I admire your honest, sincere and positive attitude during what has to be a very trying time in your life. I wish you all the best and will keep you in my prayers. Oh yeah, I almost forgot. Pretty damn good piece of writing!


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