Where poets, writers & artists won’t let chronic illness stand in the way of creativity
Dreams * Hope * Cure
Welcome to Poet’s Corner (& Artists too) ~ Issue #32
From our Editor:
With this being Juvenile Arthritis Awareness Month, we thought it would be great to salute the 300,000 children in the United States who live with some form of the 100 different kinds of arthritis.
Our special guest is Daniel P. Malito, who authored the book, So Young: A Life Lived with Rheumatoid Arthritis. Daniel is also a CreakyJoints featured blogger and the talent and voice behind the TalkingJoints storytelling series where he shares stories of living with chronic illness with his wonderful dry wit and humor.
Daniel’s stories are relatable to many of us out there. To hear the 5-minute TalkingJoints episodes: https://creakyjoints.org/community/original-content/talkingjoints/
We featured Daniel last year and he was such a big hit, that we asked him again to join us.
We all have Dreams or goals, Hope for reaching them and perhaps even being part of finding a Cure for arthritis or other autoimmune diseases. This will be explained further, with Trevor’s tale.
If you live with a chronic illness and would enjoy sharing with your stories, poems, photography or artwork, please contact me at [email protected]
So sit back, relax: Dream, Hope and find out how you could be a very real part of helping to find a Cure for arthritis, one day.
CJ Poetry Editor
In this issue:
What It’s Like (Short Story by Daniel P. Malito)
Broken (Poetry & Photography submitted by Kathleen Thorpe)
Sunflower (Acrylic Artwork by Jennifer Taft)
Tale of Clues (Story & Photography by Brenda Kleinsasser)
Editor’s Note: Daniel P. Malito ~ Our special guest shares a short story titled: What It’s Like…
Next year will be the 30th anniversary of my rheumatoid arthritis. An auspicious anniversary to be sure, but I have lived through so much over the tenure of my illness that’s it’s difficult to put into words the full scope of my experiences. There has been a disgusting amount of pain and suffering, but there has also been an equally fantastic amount of learning, meeting people, sharing, and being honored. I have contributed to Poet’s Corner before, and I always try to do something more on the artistic side, instead of just writing another blog. This time, I tried to think of the thing that people ask me the most about my disease, above all other questions, and it was surprisingly easy to come up with an answer. Without a doubt, I’ve heard the question “What does it feel like?” more times and in more forms than anyone can even fathom. What that says to me is that there is a desire among people to truly understand what it is like to live with R.A. or another chronic illness day to day, on a long-term basis. So, for this Poet’s Corner, I’m going to do my best to describe what rheumatoid arthritis is like. It’s half stream of consciousness, half allegory, and, hopefully, all evocative….
Having rheumatoid arthritis is like spraining all your joints at once and having someone wrap them all with tiny heating pads while they force you to move.
Fatigue, fatigue, fatigue. I’m so tired, all the time. I need more coffee. I need more caffeine pills. I can’t fucking sleep forever, either. Ten hours last night, what the Hell?? I can’t sleep my whole fucking life away. I wish I didn’t have to sleep at all. Bah.
I have to see my doctor for narcotics every 30 days. Fucking drug addicts, this is what they did to us legit users. Why do I have to get a script every single month, schlep into the city, and pay for a visit, because they find shyster docs who they pay cash for Oxycontin?? I had to fight my fuckin insurance company for a year and go before a judge to get the pills I need because some junkie snorted up his future. Now they want to limit the number of pills a pharmacy can get per month, regardless of the amount of scripts they have to fill? Wonderful. Disabled people screwed again.
God I’m so thirsty all the time. I don’t get it. I drink so much water I feel like I’m going to burst, and it’s doing nothing. I still wake up in the middle of the night and my tongue is stuck to my cheek. Ugh. How can someone who drinks enough water to pee 15 times a day still have dry mouth?
Hip hurting. Fear. Afraid it is wearing out after 20 years. It’s going to go soon. The doc said I don’t need to replace it all, only the top part. Of course, if the fucking doctor who screwed up my first hip but the old hip in, then I’m screwed. Scared. Angry. Frustrated.
Allison just came home from work. She works so damn hard every day, I can’t even qualify for a work at home job. Worthless. Inadequate. She knows she will probably be the only stable full time income and she still married me? She is so compassionate. Love. Admiration. My stupid disability check is a pittance. Embarrassment.
Ankle hurts. My foot hurts. Tried of walking on the side of my right foot. This botched ankle replacement was supposed to fix everything. Fury. Anger. Fist clenched. Foot hurts where the metatarsal bones have begun to poke out on the side. Goddamn this disease and everything with it. Now I have to schedule a second surgery for this ankle. Fuck. FUCK. FUCK!!!!!!!
I m going to play so video games to relax. I hate doing it especially during the day when Allison works, but I have to unwind. I boot up the game and after 30 minutes, hands hurt. Fucking right thumb hurts now, can’t play any more. Defeat. Exasperation. Frustration. Mouse on a wheel. What’s the point?
I’ll write something, that is always a joy. Hands hurt. Don’t care. This blog came out great! It will be well-received, I know it. Man, why can’t make a ton of money writing? I mean I know I’m good at it. Wonder. Questions. I guess I will try to write another book, I know if I keep trying it will happen for me eventually. Optimism. Pride.
Alarm. Time to take my pills. Sigh. Fucking heart attack pills, fucking doctor stole 20% of my heart from me. Shouldn’t have cleared me for surgery. Extreme anger. Defibrillator installed. I literally gave part of my heart to this disease, what better allegory can there be? Pride in stoicism. Toughness. Ah, I can take it, I can fucking take anything this shit will throw at me, and keep on ticking. Never cry. Always stay positive. Fuck yeah. Superiority over the weak. Pride. Confidence.
Having chronic illness is like being hooked up to a torture device with a madman at the controls. A true madman, that is, not one that has a method, or an ethos, or a procedure. Someone who turns on the torture machine at will, whenever he feels like it. There’s no way to predict when or how it will happen. The uncertainty takes many years to master dealing with, and the fact you never know makes life with rheumatoid illness and other chronic diseases extremely difficult. More so than other, less unpredictable, diseases.
Time for bed. Another restless night. Back hurts. Foot hurts. Neck hurts. Fucking still have to get my teeth replaced, 60 thousand dollars I don’t have. Here we go with the air conditioner, ready to freeze me and make me suffer another night. Still better than sweating, I guess. Exasperation. Exhaustion. I’m sure I’ll wake up fatigued again tomorrow. Maybe I’ll take an extra dose of steroids tonight just so I can have a good day tomorrow. Yeah I will. Shame. Feeling of being scolded. Don’t care. I’ll read some. Pass out. iPad hits me in the head, wakes me up. Flash of anger. Subsides. Give up. Sweet sleep, where nothing hurts.
This is the best example I can give you of what goes on in my head (and body) on a daily basis. Having a chronic illness and the unpredictability of the disease is something that is almost indescribable, so that’s why when you ask one of us “what it’s like?” we have trouble answering. I hope this gives you some insight into the struggle, and also makes you realize that you might not be that different.
Editor’s Note: Kathleen Thorpe shares in her own words:
My name is Kathleen Thorpe and I’m from England. I have RA, Sjogren’s Syndrome, Rheumatoid Vasculitis, Osteopenia, Bronchiectasis with pseudomonas colonization, high blood pressure, and in 2012 was diagnosed with breast cancer, having treatment throughout 2013, which continues today in the form of tablets. I have written quite a lot of different poems, this one sums up the effects I feel from the various conditions I’ve accumulated over the years.
I take tablets
do they work?
I couldn’t say.
I’ve bits that hurt
and bits that don’t,
bits that move
and bits that won’t!
spreading in a patch.
that I MUST scratch.
Muscles, joints, bones and skin,
on the outside and within.
Lips and tongue,
teeth and jaw,
eyes and nostrils,
all are sore.
Maybe pills are just a token.
They can’t mend me –
I’m too broken!
Editor’s Note: Jennifer Taft ~ Jennifer describes how she created this piece in her own words:
My name is Jennifer Taft, I have been diagnosed with RA for over 6 years. I have always loved art I find it more challenging with my hands but it also pushes me to continue being creative and find new ways to create art.
This was done using acrylic paint and permanent markers. It is easier to use paint pens and markers with small work because of inflammation my hands are not always the steadiest. Sunflowers are also my favorite flower.
Editor Brenda on “Trevor’s Golden Corner”
For those of you who are not familiar with Trevor, he is a Golden Retriever who helps Brenda out with spreading Tales of Awareness.
Trevor’s Golden Corner: Tale of Clues
I am so happy to be back with another tale. This time however, I am going to let Brenda share about something new and pawmazing, called Arthritis Power that CreakyJoints has teamed up with rheumatology researchers at the University of Alabama in Birmingham, which is a non-profit, patient-inspired and patient-managed research initiative. I wish someone would give me some clues to help find my bones. BOL
Here is the link and I will now let Brenda continue.
As Trevor mentioned, I joined Arthritis Power, because as a patient living with rheumatoid arthritis, I wanted to be part of the process of helping to find a cure one day for arthritis, autoimmune or other inflammatory diseases.
There are several ways you can track your symptoms, on your own personal computer or smartphone (iPhone or Android). Before I go on, this is all free and really a wonderful way to be a part of research.
I have been tracking on my personal computer. There are several ways you can do it: Daily, Weekly, or Monthly. I have been doing it on a weekly basis, so I can keep accurate track. I have been doing this for approximately 3 months. There are graphs where you can compare from week to week and so on. I like to approach this like a detective who finds clues to determine why things are. I have been paying close attention to what is going on in my life, during any given week, to see why something may or may not be different. You can rate your pain, fatigue, being able to participate in social functions, doing chores around your home. When you have completed rating each item, you will see a number and by reading what each graph means, that will give you a sense of how you are doing after your assessment. You can even share these results with your healthcare team, family and friends.
I have been sharing about Arthritis Power as part of my volunteer capacity as a CreakyJoints Regional Outreach Manager. I explain how doing this helps us as patients to finds clues in perhaps one day finding a Cure for arthritis, autoimmune or inflammatory diseases.
I have real hope, that by being a part of this, that I am helping to find clues that will one day wipe out arthritis. Before I finish, Trevor has a special message for all of you:
I hope you will join Arthritis Power and begin your path to self-care and wellness.
Be sure and join us next month, when our special guest will be Sandi Davis, a CreakyJoints featured blogger.