From Our Editor:
We have something really great, to share with you in this issue, as we are featuring a special guest, Daniel P. Malito. He is no stranger to CreakyJoints, as he is one of the featured bloggers. He has also just had a book published: So Young: A Life Lived With Rheumatoid Arthritis.
I am proud that Daniel included one of my quotes on the back of his book. If you would like to find out more about So Young, check out the CJ Author’s section: https://creakyjoints.org/content/cj-authors
I am just delighted that he will be sharing a very special story with us. It will actually be presented in two parts, so you will have to come back next month, for the rest of it.
I really hope, you enjoy this very special issue.
CJ Poetry Editor
In this Issue:
Talking To Myself, Part 1 (Story by Daniel P. Malito)
Untouched (Poem with photograph submitted by Leigh Joiner)
‘Kohoyemsi’ (Photo of a bas-relief created by Jonathan Hunter)
Trevor’s Barks of Gold (Message and photograph by Brenda Kleinsasser)
In Part 1, our very special guest Daniel imagines what he would be telling himself, at different stages of his life. Be sure and come back next month, for Part 2. Daniel would also like you to be thinking, about what you would be telling your other selves.
Talking To Myself
By Daniel P. Malito
As my disease progresses and continues along its path of transformation, I often wonder what my other selves would think of my life now. By “my other selves,” I mean me at different times during my life. What would my eleven-year-old self, just diagnosed, say to my teenage self who was living in denial, attempting to push the disease down and make sure it didn’t disrupt my life? What would my twenty-one year old self say to my current self, after learning what he was in store for? Well, I think it’s time to find out.
Here’s how we’ll do it. Each line below, I’ll put a number in front of it. That’s the age of the “me” that’s speaking. Just for information purposes, I’m 37 years old. I truly don’t know where this is going to end up, or even if it’s going to work, so bear with me. Who knows, I may just discover a few things about myself along the way, or maybe I’ll push my self-esteem off the precarious cliff it’s perched upon. I can’t wait!
37 ~ So, thank you all for coming to our roundtable discussion. Today’s topic is going to be our disease.
18 ~ Wow, what an original choice.
11 ~ I want Kool-aid.
21 ~ Is this going to take long? I have a date tonight.
28 ~ Nice 21! Is she hot?
21 ~ You know it.
28 ~ Awesome. I wish I still had my hair.
37 ~ That makes two of us. Let’s get back on track though. I want to talk a little about what the disease has done to me and what I’ve gone through over the last 26 years. Just bear with me for 11’s sake, those of you know part of the story already.
Over the last quarter of a century, my disease has pretty much run rampant, and my body has been forever altered. While I knew I wasn’t going to be the picture of health, I always thought that I’d at least end up somewhere around the average human male. Unfortunately, things aren’t working out that way, and, frankly, it’s heartbreaking. At this point, I have four joints replaced, one of which was a complete failure and resulted in a clubfoot. My other foot is in the shape of a boomerang because of an old fracture that the R.A. caused to heal incorrectly. Both of my prosthetic hips are now past their “best by” dates, are prone to dislocation, and I experience jolts of searing pain as I walk. My spine has several compression fractures that make sitting down or standing for long periods very painful. These were a result of a 70lb increase in weight from high doses of prednisone that distended my stomach so violently that my back was literally crushed out of alignment. My shoulders have virtually disintegrated due to avascular necrosis, and the one that’s replaced only has 75% of motion. The other shoulder frequently pops out of place and causes me serious discomfort. A combination of my high doses of narcotics and the steroid medication have results in the erosion of almost all of my teeth and I am now looking at a complete dental rebuild. Somewhere along the line I suffered a serious heart attack and now have a defibrillator implanted in my chest, and also take five medications to keep my heart from deforming. I am currently anticipating at least four more surgeries in the next several years, and I have no idea what my body is going to look like in ten years. I’m terrified that I’ll be in a wheelchair by the time I’m 50, and I try not to think about what the years of heavy medication are doing to my insides.
You know me, though, I can’t complain. That’s life now in a nutshell, arthritis-wise. On the personal front, I’ve met a fantastic woman and I’m getting married next year. I’ve also published a book about our life with R.A., and it seems to be getting a pretty decent reception. So, I guess the question is, how does this make you feel?
21 ~ What’s wrong with you? Are you some kind of coward now? I don’t even recognize you. I’m not afraid of anything, and even if I was, I wouldn’t go talking about it, and I especially wouldn’t write it down for other people to read! I hide the seriousness of my R.A. from most people, and it’s working. I get treated just about regular by everyone I’m friends with, and that’s fine by me. Yes, I have two prosthetic hips, but they don’t impact my life much at all. I know I’m going to get worse when I’m older but if I’ll never be the wuss you turned out to be. Oh, and, getting married? I tell everyone how I’m never getting married, so thanks for making me a liar.
28 ~ Ok, 21, relax. Easy on the wuss, you have no idea what 37 has been through. I’m just starting to get a taste of it, and it’s not pleasant. In fact, I think it’s fantastic that 37 is able to talk about his feelings and concerns in an open manner and use his writing to help others who feel the same. Personally, I don’t think I’m going to be a writer, as I hate writing with a passion, but, then again, it’s hard to argue with the evidence staring me in the face. All I know is, if I’m about to head into a period in my life that’s going to be bad enough to turn me into 37, then I better get my affairs in order and buckle up for a bumpy ride. I’m certainly intrigued that I found someone to help me for the rest of my life, though. I’m literally floored that I have so much surgery ahead of me, though.
18 ~ Haha, this is funny. You guys are all talking as if any of this stuff matters. When I’m your age I’ll be working as a computer tech and living off my millions as a website operator. I’m never going to get married, that’s for people who want to be tied down. I honestly don’t even care what happens at 37 or even 28, that’s so far off I can’t even begin to think about it. Right now, I just recovered from my second hip replacement, and I’m going to live it up. I graduate from high school soon, and then the sky’s the limit. There’s no guarantee that I’m going to live any of your lives, so I’m not even listening. Oh, and, 37, man, you sound kinda like a chick man. I dunno when you lost your balls but I hope you get ‘em back.
21 ~ Ha, totally right, 18. I don’t care about heart attacks or infections or whatever, I’ll take it all on. Nothing will ever take me down, I can face anything. I have a super high tolerance for pain, I’m handsome, I’m clever, and girls like me. Go cry if you want to, but it’s true.
28 ~ 18, 21, you guys should be careful. You probably have no idea what you are in store for. . .
Well, look where we have ended up in just a short time? God, I didn’t even realize how much I’ve actually changed over the years, mentally, that is. I think we need to explore a bit more, but for now, we will have to leave the five “mes.” Tune in next time to read the conclusion of my conversation with myself. Like 28 said, you have no idea what you are in store for!
Leigh in her own words: I was inspired by the movie Love and Other Drugs, which is based on a young woman living with Parkinson’s disease and struggling to maintain a romantic relationship. Living with Sjogren’s disease and Fibromyalgia, I too am learning how to co-exist in a world that is not always friendly to those who are chronically ill. I wanted to express my belief that living in the present is necessary for those of us fighting chronic illnesses. At least we are together in that.
A picture is worth a thousand words by Wilson Rodriguez (a family friend of Leigh’s)
In this moment, we have us .. a special connection
of kisses, near misses, tears, embraces, fears let go, time well spent
too few hours we have with each other … laughing, crying, dreaming
earning the desires of the overindulged and self-possessed
the occasion shall not be wasted for those who seek simple pleasures and envision a lasting cure
we are clock watchers with hopes for more seconds, more minutes
a chance to continue our ambiguous fate
an excuse to step into the light and celebrate a day away from the darkness
a reason to stand exposed, bearing heart to sleeve
the choice to live in our chronically now and not the illusion of tomorrow
we allow ourselves to honor these moments, no matter how slight, great, frequent, or unpredictable
together, we are worthy of our visions
we are worthy of the freedoms from those labels, diagnoses, and treatments
noble heart, you are received despite your affliction
so much strength, compassion, and resiliency bonds our stories and the like
I am part of many and those I’ve shared with along the journey and that have spilled their heart, spirit, and mind are a part of me
I, you, we, us, unitedly are this moment
Jonathan in his own words: The path to finding the gift within my RA has taken me 15 years and many interesting turns. I see now that the wounded carry a special magic, a soft healing smuggled through the Portals of Trauma. I make things and get into nature when my body allows, and flog my mind mercilessly when it doesn’t.
Kohoyemsi (Jonathan Hunter a bas-relief)
We have another installment of Trevor’s Barks of Gold, which I hope will really inspire you. We are presenting a special theme, since it was just Valentine’s Day, and hope you enjoy it. Trevor believes, that we all have something of worth to share. Find out what works for you and give it all you’ve got.
‘Trevor has an idea’ by Brenda Kleinsasser
Trevor’s Barks of Gold:
“All of us together, makes each of us stronger, as we continue to fight in unity.”