When I think of marriage I think of the marriage vows, especially the part where it says for richer or poorer, in sickness and in health, till death do us part. These are promises that are made to each other and ones that should be taken seriously. There is one part in the vows that my wife and I experienced first hand in sickness and in health. When it comes to this part, we started to learn about the challenge of sickness and the blessing of health and how both can affect a marriage. .
When it comes to her side of the story, I will let her share that in a future post. But in this post, I want to share with you what it meant to me for her to say I do. One of the questions that went through my mind was who would want someone that is fighting a disease, or has scars on their body that this battle has left them. But as I found out, when you look at yourself beyond your disease, you may see yourself as your companion sees you.
In A normal marriage, there is an adjustment period. So many new things to learn about each other and things you may learn about yourself. But add kidney disease, there was a huge adjustment period that both of us would have to make. I want to first share what my wife did and the sacrifices she made as a dialysis patient’s wife.
Cooking Renal Style- I want to first start with food. Anyone that has been on dialysis or knows someone that is on dialysis understands that there are certain food limitations that a renal patient may have. It can be a major change, especially if you were taught southern cooking. But my good wife did her best, and she surprised me each and every time with her cooking. She sacrificed much so that I could have a healthy meal…
Time- Time is precious in any form, especially in a marriage. I would say that time is the most precious thing we have. This is a big one, in fact to some, this may be the biggest one. Being that I was in-center dialysis, I had a schedule on when to be at dialysis, doctor appointments, and so forth. With both of us working at the time, this did make it more difficult for us to be together, but we adjusted. Sometimes she would visit me when I was at treatment, and other times we would try to get together for lunch when the time was available.
Not 100%- Some days I would not be 100% and would end up laying down all day and not feeling well. Things happen, and my body would say alright Anthony that’s enough today it is time to rest. When those days came, my wife would be concerned but showed a sweetness and grace that helped me through those days.
Accepting help- I was so used to doing things on my own that when my wife would get involved in my care. I was not the most open to it, from wanting to know what meds I was taking and what they did, to going to every doctor’s appointment, to seeing what my labs were month by month it bugged me. But over time I realized that she would do this because she cared and loved me.
When I look back at this time in my life, I look back with gratitude. Grateful to be loved and that I had a companion that looked beyond my disease and looked at me for who I was and I knew that one day we would enjoy the other part of that vow In Health. Throughout the years I have tried to return the love and will continue till death do us part.
As Mr. Wilson walks off and onto the exit of the treatment floor…. AW, looks to see him out of her peripheral vision……” OOO wee Dwelyn, I don’t want my arm to get that big.” “ Is there a way you cannot get those big Ol thingy things , I mean Aneurysms on your arm without me getting stuck everywhere on my arm? “,” It’s the pain of the sticking that gets me!” ,” Sheesh , can the Dr give me those tubes to put in my chest instead?”. “ I think you said it’s called a catheter?…… I replied with laughter ,” Well AW, the best option is to rotate your sites, but we could also try establishing a buttonhole procedure for your arm.”…… AW replies,” Dwelyn did you say what I think you said?…. I replied chuckling “ No not that AW , Buttonhole!”. “ That’s a procedure where we will stick you in the same hole on your arm each treatment, 1 1/2 to 2 inches (5.08 cm) apart for about 2weeks with a sharp needle and then once the holes are established, we will then continue to cannulate you with a dull needle in which it will be less pain.” “ We will just have to peel the scabs off each time prior to your treatment before initiation.”…… AW replies,” Okay I guess we will cross that bridge when we get to it. I should have about an hour and half on this machine give or take, huh?…. I reply ,” Close to it “….
As I continued to talk to AW and while documenting her vital signs, I get a slight tap on my shoulder from behind. I turn around, and it’s a patient I haven’t seen in a while. “ Hey Dwelyn how you have been Bruh?” I reply with extreme excitement…” Oh, my how you have been ?”…” It’s been awhile since we’ve seen you here. You were M.I.A.!, lol?”…… She replied, “ Well you know how I do bro man.”…….” Sorry for being rude.” ,” AW ,this is Cadence aka Patience Sustained. Cadence ,this is AW. “…… “ Peace be unto AW my Sista.”……” AW, replies ….” Howdeedo?”…. That means how are you doing in my native tongue. My parents are from Jamaica. Spanish Town that is”……. Cadence looks at me and then replies,” Dwelyn I like this Sista.”…… “ Well AW I’m originally from Tulsa,Oklahoma and grew up in South Philly. I visit both cities from time to time. My son is in Philly with his father for the remainder of his Thanksgiving break. So I see you’re new here. Well new to me. I’ve been gone for about two months. I left here in August to do home dialysis training, and it went okay for a while. And now I’m back.”….AW replies…” Wait a minute young lady. You said you have a son?”…” How old you be gurl?”…. Cadence replies,” I’m 27. 2+7 = 9. I like to define myself as Defined 9 , lol.” …… Okay I hear you gurl, get it.”…… AW, replies with a chuckle. “ Cadence so how old is your son?”…… “ He’s 16 going on 30. My Sista he thinks he’s my Daddy/ Man.” “ He’s such a protector of his mother.”…… “ He’s in High School here and will return in a week. He just got his driver’s license too, so it definitely came on time with the events that have been happening in my life these past few months. “……AW replies….” I see. Well at least you have a good support system with your son. Is he your only child?”……. Cadence pauses a bit……” Well……… My late daughter passed away three years ago. She had a severe heart condition at birth. She was very ill. In and out of the hospital from time to time. It was a constant struggle in our household. Her father had left me during a time when we needed him the most. He just couldn’t bare it. But he came back in her final year. He said something told him that he really had to be with us. AW, I’ve learned with most men, they can’t accept the reality of life and death. It’s in their nature to try to save everyone. He was in such denial. When Karma was born, I felt it was something not right with her. But she was a for sure blessing.”…… As AW tears up instantly……” Cadence I indeed know what it’s like to lose a child. We lost our third-oldest son Anthony in 94. That’s a parent’s worse nightmare. To outlive our children. Cadence I’ll keep you in my prayers…… Cadence replies….” Thank you, AW, I appreciate it. I wear her birthstone of a Peridot in remembrance of her. And I also wear her ashes around my neck in this necklace that was given to her as a gift by my spiritual godmother. It’s a Feng Shui Brass Wu Lou Gourd. “…. “Cadence ,that’s lovely dear. You have such a warming spirit about you that’s very welcoming. I like that in people. Cool Vibes I can dig. You mentioned you were doing this dialysis stuff at home. You didn’t like it?”… “ I mean this is just my first day and I have been here forever. So it seems. “…. “Ha Ha AW my Sista, I’ve been on dialysis for almost my whole life. I was diagnosed with lupus, Type 1 Diabetes, and I had a heart murmur. I’ve done peritoneal dialysis , but I contracted peritonitis. Wooooo it’s very painful and could be life-threatening. Being in and out of the hospital with all I got going on. On top of that, I suffer from hypertension also.” …….” The struggle is real , but I keep on moving on.” “ I have to for my son.”………” Wow, Cadence girl you’re a warrior. “…” So I just have to ask you this. Dwelyn mention your name aka Patience Sustained.”, and I just want to say I love your outfit .” “ That’s such a beautiful white dashiki top you have on. I adore that pink design around the collar. And those lovely navy-blue drawstring pants look comfortable and snazzy. And your head wrap with the hot pink roses is like the crown of a queen. “ Cadence smiles from ear to ear and replies ……” Thank you so much AW, that’s peace. Well these are my designs that I created. I make my own clothes. Thank you for the compliment. “ ….” Patience Sustained is my stage name when I perform at spoken word downtown on Thursdays. My crown as you would say symbolizes my name.”…… As she removes her head wrapped crown to embrace her appearance of her head with short thin hair as it complimented her deep dimples and bronze skin….….“ AW , I’m also a Breast Cancer Warrior.
I will come right out and say it, there’s been times when someone has offered me something and I’ve said to myself- ‘But I might not be able to stop at 1”. Other times when I’ve had to mentally prepare myself before going to a party- pretty much giving myself a pep talk consisting of don’t eat any carbs, don’t even look at the cake, only eat the veggies, I hope they have a veggie plate. If I was going to a relative’s house, then I knew the pressure would be on, my family would be merciless in offering every delicious carb filled fried Spanish delight, and if you said no, oh boy, you’d better be ready to answer a firing squad of questions like why not try a little, why don’t you want to try some, is there something wrong with my cooking, and one of the worst- just eat it, you’re not going to stick to your diet anyway.
And, they’d be right about that last one…at least they were right about it for most of my life.
Fast forward to today. I’m now a mom of 3 who’s reclaimed her body, and healed herself mentally and emotionally. I’d like to share 6 of the ways I’ve used to shut down food pushers for good- things I’ve done personally and lessons I’ve learned from working with other women who have faced similar challenges and are continuing to change their lives.
1. REMEMBER THAT CHANGE IS HARD FOR EVERYONE
When the topic of food pushers came up, a client of mine who had lost a lot of weight let me in on her very unique strategy, she told me “I remember that I’m not the only one dealing with change.” She knew that as scared as she was of people pressuring her, many of the people pushing food on her were doing it because they were scared. They didn’t want their friend to change because it meant they might have to change. They didn’t want their friend to turn down deep fried oreos because it meant that they might have to reflect on why they needed to eat deep fried oreos. So she started realizing that they were more scared of her than she was of them. That change in mindset was enough to take some of the power back and more easily help her say “no” to an extra helping of whatever was being offered.
2. RESPOND WITH VALUES, NOT OUTCOMES When people push food, a lot of what they say falls into the “one little (fill in the blank) won’t hurt you” category. You can choose to ignore it, but if some people are really really pushy you can respond in an unexpected way that turns the focus of the conversation. If the idea of saying, “but I might not be able to stop at just one” is scary for you, try practicing “I’m doing this for myself.” Or, “I’m practicing willpower.” Or, “No thanks, I’m on my way to being a better me.” Responding with the values you are trying to embody rather than the outcomes you want is a great way not only to shut down a pushy person, but serves as a reminder to yourself about what YOUR journey is really about.
3.The Importance of Setting Your Healthy Boundaries Around Food
No matter how insistent the food pusher in your life is, you are the only person who decides what and how much you eat.
You get to draw that line yourself! Maybe one day you decide to have dessert with everyone, but the next week you would prefer to skip dessert. Maybe you plan to have a big fancy breakfast with everyone on Sunday, then the next few days you go back to intermittent fasting.
Everyone has their own definitions of what healthy means to them and everyone has a different way of eating.
Just because it’s right for someone else, doesn’t make it the right decision for you. (I had to tell myself that a LOT during my 75-pound weight loss journey).
If you have been giving in to the food pushers in your life up until now, it’s very likely that the first time you set a boundary, they will be shocked and they might not respond very well.
Don’t give up.
The more often you stick to your boundaries, the more they will know that no means no.
You may choose to offer some kind of explanation, but you don’t owe it to them.
Remember that YOU are the one who ultimately has to deal with the consequences of overeating, not them, so you are the one with the authority to make the decision about what you eat or don’t eat.
4. CHANGE THE FOCUS
If someone says: “I could never give up bread.”
Say this: “It’s an adjustment. But my digestion is better, and I like the way I feel.”
People might indirectly comment on your diet by saying how hard it would be for THEM to give up alcohol, carbs, sugar or however they interpret your diet. The problem with this way of thinking? It reinforces the idea that eating healthfully means depriving yourself of yummy delicious food. So, change the focus and redirect the conversation. Focus on what you GAIN from your food choices. You feel more focused and less bloated because you’re intermittent fasting. You’re sleeping better because you’re not staying out late drinking every night. You’re saving money because your meal prepping instead of eating out every day. That’s a positive change — and it’s a change you’re making for YOU.
5. SAY “I DON’T” INSTEAD OF “I CAN’T”
If someone says: “Just one cookie won’t hurt or try this (fill in the blank)…”
Say this: “I don’t eat gluten, but I appreciate the offer.”
Here’s the possible situation, picture it- You’re cutting back on sugar and gluten. Then, someone offers you a cookie. That’s nice of them, but not part of your diet. You say, “I can’t eat that.”
They push you anyway, saying, “Just a bite won’t hurt.”
What’s wrong with this picture?
You physically can eat the cookie, yes, but you’re choosing not to because it doesn’t fit your health goals.
When you say “I don’t.” It’s more forceful and makes a bigger impact because you’re reinforcing your personal choice and setting a clear boundary. That slight distinction also makes it easier to stick to your decisions and not cave under pressure.
6. REMEMBER WHY YOU STARTED…the deeper why
If they say: “But you don’t need to lose weight or You’re on vacation, who cares!!
Say this: “I feel more energized and productive now that I’m eating better and losing weight.
A Lot of people think that being “on a diet” means you’re trying to lose weight. That’s not necessarily the case. Your diet is the food that you habitually eat. You might change your diet because you’re trying to lower your BP or you’re intermittent fasting because it might help you reduce your risk of cancer, you’re eating more balanced meals and fewer processed foods because you want more energy or maybe you want to reduce your sodium intake because of heart problems, you’re packing your lunch because you’re tightening up your budget and saving money… There are tons of great reasons to eat more healthful and nourishing meals, and they’re all great responses when people ask about your diet.
Big change starts with small steps. To create healthy habits, make simple, sustainable swaps and stick to them. That’s it. There’s no magic pill or secret formula. Whether you’re adding collagen powder to your coffee, taking a multivitamin, committing to a daily walk, journaling your thoughts, or eating more vegetables, YOU’RE taking control of your health and wellness.
.“ Well AW , those jumping mountains as you would call on his arm is what we call an Aneurysm!”…. AW replies ,” Anna who?””…. “ Sheesh Der Boy there you go with those words Mon!”,… “ Me can’t take it anymore!”… “ Where did they come from?”, “ Do they be hurting him in any kind of way Mon?”,” As laughed heavily,” No AW they don’t hurt his arm.”…. “ Dwelyn they are huge!”… “ How did he get those?”…… I replied,” AW I really can’t discuss another patients care, and……… “…… “ Lol , hey there how are you ma’am ?”, “ You must be new here?”… “ My name is Arnold, but they call me Mr. Wilson. Nice to meet you!”…. As he still has his hand over his site taped up standing in front of AW. “ I heard you talking about my arm and how they look like mountains.” ,” You’re too funny.”…… AW replies,” I apologize sir my name is AW , but today is my first day, and it’s been very interesting here in this place. I’ve talked to so many people and have learned a lot. None of it really stuck to my brain, but I’ll manage.”…. So, Mr. Wilson where you get those big muscles man? “ As she chuckled …. “Well AW I am on the first shift and I got here at 0430…… I’ve been a Hemodialysis Patient for about seven years. I used to do my dialysis at home for a short while, and it seemed to have gotten a bit too much for me. When I first got here the Techs and the Nurses told me every treatment that I should always rotate my sites. Meaning that when they stick those needles in me, they have to move around all over my arm. And let me tell you I wasn’t a great big fan of them sticking me all over my arm. I wouldn’t let hardly nobody touch me , so I guess you could say I had my favorites. Hey I wouldn’t even let Dwelyn touch me for a while either.”…… AW replies,” Well why you had your favorites and Dwelyn seems fine to me. What’s the big deal? “ … “ Oh trust me AW it’s a very BIG DEAL when it comes to your arm access and your life. “… “ AW let me tell you that it’s very important that when the staff sticks or cannulates your arm , that they rotate the sites to avoid your arm looking like mines. When I first started dialysis years ago I was in a different place. I was mad at the world , my family, the staff, and even myself. I was full of anger and regret. I didn’t realize, or should I say , I failed to realize that when it came to my health and my will to live was my main priority… The dialysis staff has always had my best interest at heart. Just one of the ways the techs here tried to explain to me is that with my fistula , I have to take care of it like it’s my baby. Meaning that I had to guard it and care for it as if it is the most important thing to me. I must admit getting stuck here, getting stuck there, getting stuck waaaay up here, waaaay down there all over my arm was crucial. I showed resentment when one of the techs blew up my arm.”…… AW replies,” Blew up your arm?”…,” Man they be shooting in here , LOL?” …. As she laughed. “ Mr. Wilson laughed and replied ,” I mean they infiltrated my arm, and it was horrific. The pain was quite unbearable. And that’s just me being nice. My arm blew up like Popeye, LOL. Only thing spinach couldn’t help me. You see what I’ve learned is when you get infiltrated, your arm swells up, and it’s excruciating pain. What happens is when they stick you , and miss…. That blood exits outside your access vein and enters into your tissue and causes swelling. They said that I was a hard or difficult stick. Due to my arm access wasn’t ready enough or mature. I had to apply ice on my upper arm to reduce the swelling. It traumatized me. So, after that horrible experience I became resentful. My attitude got worse, and my confidence in the staff had diminished. Nobody knows how it feels to sit in these cold hard chairs day after day not knowing if it’s going to be your last. Meaning if you’re going to have a good day or if they make a mistake, and you end up in the hospital. Many things go through our heads as dialysis patients when we sit here. As time went on I would only let a few people stick me, but I only told them to go in certain spots on my arm. I did that because One it’s my choice and my body. Two it hurt less and it worked for me. Three I was scared. For it gave me a fighting chance to feel like I have control over my life like once before. This dialysis is hard but I get through it. Many members of the staff have told me time and time again the importance of rotating my sites for cannulation. In other words I should allow them to stick me in different places each time I have dialysis. The compromise was it may hurt in a new spot, but it keeps me from possibly going to the access center, I get a better cleaning of my blood, I can possibly feel better, and it could possibly reduce the prolonged bleeding. And…. All I could think about was the pain of that needle…… Woooo…, LOL! So AW I’ll leave you with this because my ride is waiting, and I think I’m done …… Done bleeding. Dwelyn brother, you take care , and AW remembers this. If you don’t want these big mountains on your arm, listen to the staff when they say they should rotate your sites when sticking you, but you also have a say so as well, and it’s never wrong to be educated about your arm access and your health. I’ve learned that we as Dialysis Patients are an important part of this team too. Take care AW and I’ll see you Wednesday.
So Naomi, I’m sure Oscar told you all about how we met. We only talked briefly that day at the gas station. However he didn’t have time to mention much about you. Naomi replies,” ……”Well the last 2 years have been rough for us. From the time we moved here 6 years ago things were doing quite well, and then life happened. Oscar lost his job, I got injured at work, went into the hospital, got sick, our income declined , we lost our house and as of the end of this week, we are getting evicted from our apartment around the corner. You know things just happened so fast and it crumbled right before us. It was like watching a soft piece of tissue just catch fire and it happened so quickly. We don’t have any family here. Our only son committed suicide years prior to us moving here from Rhode Island. It’s just been one thing after another…..Even though I’m on Hemodialysis, I feel like a burden and feel so bad for Oscar. He’s trying his best to hold it together. At night I feel hopeless when I hear him crying in the dark saying “ Please Lord, why is?”…..” This is a lot Belle. “ I Don’t Know About This?”…… It’s so surreal…… I replied ,”
Oh my goodness Naomi, I tell you what. My husband and I stay a few blocks away from here as well. We are practically neighbors in a sense. We have a lower level basement in our home. It’s not much but we use it for guest if we have visitors. It has a pull out couch, bathroom and a small kitchen dining area. It’s not 5 star but it’s cozy. If you want, and are interested you and Oscar both can stay with us…….Naomi gives a blank stare and tears of joy and relief fall from her eyes like Niagara Falls…..she replies,” Oh Belle, you don’t even know me or my husband that well and you’re opening up your home to us!”,,,” This is so amazing, but we can’t afford it. But Thank you…… Mrs.Halona replies…” We aren’t asking for any money. All we ask is that you pay it forward to the next person when you’re able.”….. Naomi replies ,” Well who would’ve thought that my very first Hemodiaysis treatment I would experience such agony , but also supreme gratitude. Thank you Belle. “
“ Now fast forward to the present Dwelyn, after Belle and Oscar moved in with us things were getting better for them. Belle was adjusting to Hemodialysis more and Oscar was starting to have more hope. Still down on his luck with finding work though .Then one day my worse fear came to reality . My husband passed away in his sleep on a day I had to go to Dialysis. It must’ve passed away throughout the night while sleeping. He had a few complications with his heart and suddenly lost the battle. I cried so much until I felt so empty inside. I held his hand with my head bared down on both of our hands while he laid in bed. Belle and Oscar were down stairs not knowing of how I felt upstairs until I finally called them from the top of the stairs of my room door . At the time I was walking with a cane majority of the time but needed a wheelchair every now and then. Belle too, had a walker but sometimes needed a wheelchair too. Oscar didn’t know what to do. He was more in shock then we were seemingly. Now Oscar was the man of the house I guess. Lol…..As time went on neither one of us could drive , so thank goodness we stayed close to the Dialysis clinic and a grocery store was close too. Oscar would walk with us both to dialysis or would push us both in the wheelchairs when needed. Belle was still second shift and I got bumped to first shift so it wouldn’t be much of a strain on Oscar to walk with us back and forth. Then Dwelyn we were faced with another tragedy. After my treatment I noticed Oscar wasn’t there to pick me up to wheel me back home like he usually does. It was sad to learn that Belle passed away in her sleep the night prior I supposed. Oscar must’ve realized it when he got back home after dropping me off at Dialysis. I’m sure he was in disbelief. Naomi was his world like I mentioned before. They both, Naomi and Oscar were like children our husband and I never had. Besides my niece, they were …Excuse me are family. So after losing my husband and then Naomi to follow, it was a definite hole in my heart. Oscar took it really hard. After Naomi’s death , Oscar wasn’t the same. He mourned so heavily day after day. He lost sign of hope. He stop eating . He wanted to give up on life. He wrote me a letter a week after Naomi’s home going. Here’s what it said:
Dear Momma Belle,
I hope that you will not be mad at me but I have to leave. Each time I lay down at night I picture Naomi there by my side. Just to reach over and it’s just a memory of her figure. I can still here her laughing like she always does. I can still feel her presence around me as if she just walks by. I picture her smile ever so clearly in my mind it’s hard to erase. I don’t want to erase it. I have to accept the fact that she’s gone and never coming back. I will be back one day to check on you. I just need time to grieve and be alone.
Good Bye Momma Belle.
“Dwelyn , Oscar went back to his old ways of living life as a person living on the street. See, Oscar was never homeless. He just developed a homeless mentality. From the day my husband and I met him at the gas station , he was down on his luck and already counted himself out and down for the count. Life has a way of showing people the right things and the wrong things due to our perception. It’s up to us to make the appropriate decision of what to do next. Oscar wore the same outfit for weeks after Naomi passed. He never packed their belongings from our home. He just left and roamed the streets for weeks. After a month passed, it was on a Wednesday I remember so vividly. I finished my treatment and as I wheeled myself into the lobby, guess who walks through the sliding glass door of the Dialysis clinic? “ “ It’s Oscar……he says,” Hello Momma Belle, I was thinking about you a lot while I was gone. I hope you forgive me for stepping away so suddenly. Naomi’s death really took a toll on my soul that has been a forever debt that can’t be paid. My sincerest apology!” I said to Oscar,” It’s okay son, now let’s go home!”
“So ever since then Dwelyn, Oscar and I have been living our lives as normal as we can. He still lives in our basement as him and Naomi once did. He helps me around the house. Goes grocery shopping for me, and helps me with going to my doctor’s appointments when needed. I still think about my husband from time to time. Only the good times. Oscar talks about Naomi from time to time also. He’s still picking up the pieces , but he’s managing. And Dwelyn that’s the story of how I met Oscar. Who knows how far a Turkey Sandwich can go ☺️😉.
As I walked back into the clinic from wheeling out Mrs. Halona, I approached the lobby from walking up the sidewalk ramp , through the sliding glass door. Walking to the treatment floor door . As I push my key code into the keypad , I hear laughter and people singing…. I’m like okay as I say to myself “ Is there a party I didn’t know about?” ….. As I open the door I hear music playing and patients are dancing in their chairs and staff are moving to the near as they work. What you know , AW accidentally disconnected her Bluetooth earbuds from her iPad, and it connected to her Bluetooth speaker in her bag and the volume was at an all-time high. The song Fantastic Voyage by Lakeside was playing and let me tell you I know that I saw patients that once were in wheelchairs , stand up….. patients that walked with canes were twirling them, patients that were once sad became a little happy, treatment times ended for most but nobody cared. It was that moment when music soothed the soul of our clinic. Every Pod was jamming. We had a few patients in the lobby saying” Is it a party in there?” . AW, looking with guilt trying to cut the music off but remembering if she moves too much she might set the machine off and possibly infiltrate her arm. Then her blood pressure cuff pumps up leaving her restrained . Not to mention she was reclined. I just stood there and laughed. For once, we all forgot about being short-staffed and the existing burnout we were experiencing. We were caught up at the moment. As I made my way towards her, AW finally got a grip onto things and immediately turned the music off. She replied ,” Oh Dwelyn I’m so very sorry. The music was loud, but I was jamming Man”. “My EarPods came out of my head, and somehow it got disconnected from my Bluetooth and Boom Yaaaaoww!!! It was a concert here boy… Lol…. “It took me away, far away I say from this place here for a moment!” I said to her…. “It’s okay AW. We need a little spunk sometimes. Well at least now you only have about 2 hours left in your treatment. You’re trucking along I see.” , “ AW replies…” Yes I’m moving right along. It’s not that bad once you get used to this Dialysis stuff, but only time will tell.” And just as I was going to take off my gloves and gown to go to the bathroom, I hear…” I’m bleeding!””…… I turned to my right and see Mr. Wilson holding out his right arm away from his body. Slight hint of blood soaking through his shirt that seeped through the gauze and taped wrapped securely. As he walks slowly with his back bent over slightly and in panic mode. I tell him ,” Mr. Wilson, take your left pointer and middle finger and hold your site firmly where your needle sticks were.”…. He replies,” Dwelyn it’s blood , uggghhhh!!!! Now you could just imagine the look in AW’s eyes. Startled I say. So I proceeded to tell Mr. Wilson as I approached him with a new pair of gloves for me , a pair for him , and a few bleach rags for the blood spill. I then tell Mr. Wilson to press firmly where his anastomosis is. ( his incision site where his fistula access begins near his forearm.) I see a full trail of drops of blood about only ten feet away. Now as a Hemodialysis Technician it’s safe to say this is what is expected in our job description. Granted I don’t want to say this is the norm. I ask Mr. Wilson to have a seat in one of our spare chairs we have just in case this ever happens. If you’re in the Hemodialysis field , you know what I’m talking about, or you can simply relate to this. It’s kinda like cheating during change over. Since time is of the essence with shift change, and we purposely don’t want to treat patients like cargo, but that’s how scheduling goes. It kind of feels like you have to get your patients in and get them out like an assembly line. That’s the one thing that has always bugged me throughout all my years in my profession. Cool thing is our clinic is big enough, so we can use extra chairs in the clinic for each pod. To make it fun we call each spare chair in the clinic The Timeout Chair. Well think about it for a second. Some patients feel rushed by us as staff members sometimes while others rush to get out of here because I don’t know about you , but I never in all my years in my profession ever met a patient who wants to stay an extra second at the clinic. Then we have this thing where patients have to rely on public transportation. Oh, that’s another story I’ll get into later……. So as Mr. Wilson applies pressure with his fingertips, his fingers are moving up and down at a rapid speed. Boom Boom………. Boom Boom ……… Boom Boom . The blood slowed down from his access ,but not quite. While I’m cleaning up the blood spill with the 1:10 bleach solution AW is catching all of this action…. If you will…… Eyes like a deer in headlights on full beam . Now I’m done, and I take the drenched bloody bleach rags to the biohazard , I throw my gloves into the biohazard as well…… Ahh, Man! I have a little of blood splatter on my gown, so I have to change that too. I’ve got to throw that away now as well. I proceed to wash my hands at the sink near AW with my back turned. Now I can see her reflection in the mirror over the sink looking at me , looking at Mr. Wilson and back at me again. Woo I tell you I’m laughing so hard with tears in my eyes because AW is looking like she’s seen a ghost or a horror film. I clean up, put on my PPE( Personal Protective Equipment), and take two blue pads, some gauze, some tape , some alcohol, a special band-aid, and a few gloves to put on Mr. Wilson’s hand. After I clean him up and told him to sit a bit, I make my way back to the sink where I washed my hands prior with AW to my back. As I’m washing my hands with my head down in deep thought. I hear AW say my name “ Uh , Dwelyn I have a very serious question?”……. I look up into the mirror again and see her face behind with eyes bulging, her right hand raised slightly to the left of her mouth as if she was hiding what she had to say, so nobody could hear her or read her lips…. I see her mouth moving silently…… This lady I tell you. I reply “ AW what’s up?”…… She replies ,” Why is that man’s arm over there who was bleeding have two big mountains jumping up and down on his arm ?”
During my time in dialysis there were many things that helped me and I want to share some of these experiences. In this blog, I want to share with you one of the most valuable quotes and the lessons that I have found.
As a dialysis patient, I did not want people to know many of the things that I faced day to day. Whether I was on dialysis or not that day, there were some things that I faced, I would not want my worst enemy to face. When you think of life itself, life can be difficult, now add kidney disease on top of that there are even greater challenges that you may face. But here is the good news about life. It will not give you more than you can take, in fact, these challenges that you face help you to grow and learn. Life is for the student to take and apply to their lives so that one day they can teach that experience to others that need those lessons.
So how did I take the negative of the situation of dialysis and try to make it more positive? I would say that I reached into that vault in my mind and took a lesson or a quote and used it for my benefit.
Keep Smiling, It Makes The World A Better Place.
This is one of the lessons that I was taught at age 21. It was a very difficult time in my life then, many things were not going my way. It was during this time that one person said to me, “ Anthony, keep smiling, it makes the world a better place. Oh, how I love this quote, and I have used it over and over and over again in my lifetime. Especially when I was in dialysis, it would help me and uplift me and those that were around me as well. Thinking about it this way, not only did it help me, it helped those other dialysis patients around me.
Who knows the impact of a smile? The one that it is given to, they understand what an impact that smile had on them. During my time on dialysis I tried to always have a smile and here are the reasons why. It may make someone else’s day.- Just think that someone may be having a worse day than you are having, and you smile. It may just pick up another traveler’s weary spirit and give them the strength to keep pressing one. If I had time to frown, then I had time to smile- Time is valuable and when I add the time it takes to smile versus the time it takes to frown. There is no difference. I would say using that time to smile is a wise choice to make.
With these two lessons in mind, what makes a smile powerful enough to change someone’s mind, their perspective, or even their world? It is as simple as this. By taking the time to smile. You feel better about yourself and what you may be facing. That feeling if caught in a smile holds the potential to make someone else feel better about themselves, and before they know it they are smiling as well. A smile is ever giving, and I know that in the time that we live in, many may not be able to see someone smile if we are out in public. But not only can a smile be seen it can also be felt and that my friends is a wonderful feeling.
So as you go through the day “Smile My Friend it Makes The World, Your World Someone Else’s World a Better Place.”
“After Oscar introduces hisself to us. My husband, my niece Hope, and myself I asked him if he lived close by the gas station.” I replied ,” Mrs.Halona , the gas station around the corner here from the Kidney Trails Dialysis Clinic, correct?”… “ Yes Dwelyn, just listen!”He mentioned that he does now but not always have . You see a few years prior to you working here Dwelyn ,Oscar’s wife was a renal patient here. She was the love of his life. They dated all throughout high school and throughout college out of state. Oscar and his wife were from Providence,RI. They moved here to Phoenix close to 6-7 years ago. Oscar got a great job offer with the local Pharmaceutical company that was known nationwide. His wife had her own cleaning business, so they both were well off. They had a son , but he committed suicide a couple of years prior to moving here out West. Phoenix was also a new start with new beginnings. They were moving on with their lives supposedly. The last 3 years here have been very tragic for the both of them .Oscar got laid off from the Pharmaceutical company and his wife suddenly fell ill and was diagnosed with ESRD. Oscar mentioned she was a diabetic but managed it quite well. However while she was at work cleaning one of her clients house, she slipped and fell off a ladder while cleaning a window that was non reachable close to the stairs of the two story home. She broke her hip and right leg. Oscar was devastated. His wife on the other hand was always in great spirits. While his wife was admitted in the hospital, unfortunately she caught a bloodstream infection that affected her kidneys and caused them to decline in function slightly. At first she was just in the Acute stage of renal failure , but her condition grew worse. Oscar remembered the day when the Nephrologist confirmed that his wife was in Stage 5 Renal failure and would have to be put on Hemodialysis immediately. They both were distraught , but remained high spirited to fight this disease together. Even though deep down inside, Oscar was a nervous wreck. Not only was he unemployed from the Pharmaceutical company, his pension was running low and with hospital bills , etc…. the funds were quickly declining. His wife could no longer work so with all that being said they ended losing their home they bought that was located further north of Phoenix.They received little assistance, but it wasn’t enough. Good thing is the apartment complex they moved into was close to the Dialysis clinic here where she later became apart of our family. I remembered her first day of dialysis here. I was on the second shift and was waiting in the lobby to be called back to the treatment floor. Their were a few of us waiting as well. About 5-6 of us laughing and talking about who’s working, what games are we going to play while on dialysis. We loved bingo because they gave away good prizes, and when we can hurry up and get dialyzed and get it over with. You know Dwelyn , I’ve never met a patient who wants to come to dialysis. We come because we have to if we want to live. But it’s still a matter of choice. Anyway, Oscar came walking into the lobby kinda startled. We knew he was new but didn’t know what he was there for. He had this look on his face as if the world came crashing down on him. It was with great sadness and despair. He was looking for a wheelchair in the waiting room area. He found one and took it outside. I recalled when he came in the clinic, he kinda looked familiar but my mind was a blur. It bothered me to a point I was in a daze . Then it came to me….. I mumbled to myself “ Oh!”…. The other patients around me said ,” Mrs. Halona are you okay?,,,” I said,” Oh I just burped! Lol…. Anyway as Oscar came back in , was pushing a woman in the wheelchair with her hair kinda stringy, and she had an old thin blanket , and a brown paper bag that was very wrinkled. She sat there very quiet and just looking around. Not saying much of anything. Oscar sat down beside her holding her hand as they waited. So I figured that she must’ve been new. After me fully recognizing him , I wheeled to him and said softly,” Hey you remember me from the gas station a few days ago?”… “ He lit up and said ,” Yes I do!”…. “ Honey! “ as he said to his wife. “ This is the lady I met the other day that gave me the sandwich that I brought back to us. “ … she replied” Oh Thank you sooooo much!”, “ It was delicious.” I replied ,” You’re very welcome.” …. So after talking to them briefly , my Dialysis Tech called me back to my chair in the Bahamas Pod. “ So I told them both ( chuckling) ,” Well it’s my time to go back and face the music”. They both waved happily and said ,” Well I hope the music is great because we have to face it too.”….. As I started my treatment , within 20 mins my Tech wheeled in Oscars wife next to me into the empty chair. I said “ Hello neighbor , how you like the music?” Lol ….. she said ,” Oh my it’s loud and busy here.” , “ Not like the hospital. Where are the beds for us to lay in?” … I replied well , you’re in for a treat. Once you get settled and get started with your treatment I will feel you in on all the details and the low down of our clinic. Don’t worry , you’re in great hands here. By the way my name is Belle, Belle Halona, what’s yours? She replied my name is Naomi, pleased to meet you.
Can dialysis stop you from living? I believe this can only be determined by the person that is on dialysis. But this can also be asked of anyone that may face a life changing situation. Why many may have their own answer to this question, I want to share with you the reader a story, the lessons, and my philosophy on this very subject.
When you have a life changing situation sometimes you wonder if life will ever be normal and this can go even into having a relationship. I was 24 during this time and desired to have a companion, someone to share my life with, raise a family and grow old with. How could I, being a dialysis patient, obtain this far-fetched dream?
It was at the start of September that a friend of mine was talking to me and suggested that I ask this young woman that I had known for sometime on a date. I was not too thrilled at the idea at the time. Looking back, I wonder if it was the thought of being worthy of such an opportunity, or was I just plain scared of what could happen? Being a little hesitant at first, he suggested perhaps give her some flowers and see where it would lead. Within a few days, the flowers had been purchased, and I was at her door. But alas she was not home, so laid the flowers at yonder door and left.
Within a few days I texted to see if she had received the flowers to which her reply came back yes and thank you. After a few casual Texts back and forth, I got the courage up to ask her on a date.
A dialysis patient and going out to eat sometimes don’t mix. Unless you know what restaurant you are going to and what they have on their menu that you can eat. Which to my delight the restaurant that I had suggested she loved as well. By the end of the night, not only was the food good, but I felt comfortable in her company, comfortable enough that a second date was planned.
Being that I worked retail at the time and did dialysis, my schedule was a little hectic. There were only a few nights that I would have open in the week and generally after work, say around 10pm. This being the case, our dates ended up at a drive through that was open until midnight.
Engaged and Married
It was not long in fact it was that October that I asked her to marry me. The answer was a yes and now there was a date to set which we set it for December yes of that year and a wedding to plan all in a short 3 months. It was a flurry of activity, wedding plans, the music, food, rental hall, planning the honeymoon, scheduling dialysis in a different state yike I could not forget that. The next treatment day I asked to fill out a travel form, which I did, and that was that. Never once told my dialysis care team I was engaged or even dating, you would think I would have, but that did not come out until the wedding was about 3 weeks away. During one of my treatments, I asked the tech that was taking care of me how early I could come in. She said 5:45 which I was already coming in at that time, then she asked why I wanted to come in earlier than that. Well I am getting married that day and the sooner I run my treatment the better it would be. The next thing I know, she yells You’re GETTING MARRIED, I DIDN’T KNOW YOU WERE EVEN DATING. Well, that got the attention of the whole room of both staff and patients. Next thing I knew, everyone was asking questions about my fiancé such as, how old was she, how long did I know her and what did she look like, what did she do and so forth. By the time the questions were over, I felt like I had been put through a wringer, but the staff were like family to me and wanted to make sure that I got a good wife. They even said to come in around 4:45-5:00, and they would try to get me on earlier.
The big day was upon me and having rehearsal the night before and getting things set up. I was pretty tired the next day and I got up around 3am and finished packing and then went to dialysis. After dialysis everything was a blur, get ready, pictures, set up well you get the picture. By the time I walked down the aisle I was very tired but despite being tired I made it down the aisle and the wedding went, I was able to even sing to my bride during the ceremony. By the time the reception came, my new wife and I had talked and we both agreed that we would leave as soon as we could. So after eating, we told our parents goodbye and left.
Life Goes on with You or Without You, It’s Your Choice.
If you wait until every aspect of your life is perfect for that special moment. You will never experience it.
While some may argue that certain circumstances in their life holds them back. I would dare say that they are right, there is one thing that holds them back, and it is them. I could have allowed dialysis to hold me back in my life. In fact, my wife could have allowed dialysis to hold her back, because she knew that she dated and married a dialysis patient, and she did not have to. There were so many reasons for her not to do either, and they were valid reasons, but she looked, I looked beyond those reasons and moved on with life. If it was anyone that held me back, it was me. There is no question in my mind that had I allowed myself to hold me back, I would not be married, have a family. And do the things that I have the privilege and opportunity to do. So I ask, can dialysis stop you from living your life? It can, but only if you allow it to. That is totally up to you.
Growing up history fascinated me. I was that kid that memorized key details of battles and even considered teaching history. Having been a student of history since my formative years, I have come to understand that history has patterns. One pattern is that each generation is often defined by a watershed moment or key event. Battles, wars, and the rise of empires have come to define many generations. In other cases, generations are known by the pandemics they face. This is definitely the case with my generation, the generation of COVID. This is how I define my generation.
Comfort is What We Crave
Over the past year, few events have taken the world by storm quite like COVID-19. Before COVID-19 our lives were relatively normal. We went outside, got together with friends on the weekend and went to work at a physical location. This was the age before COVID-19. Then a virus entered the world that would change the course of our lives. At the time the Virus was first reported here in the United States many of us thought this to be unthinkable. Then again, is it all too unthinkable that such a virus could occur? The way I see it, the Virus is not that surprising. History is filled with examples of extraordinary evil and destruction. So, in this world, is it really hard to imagine a virus that can kill millions? This has happened before with diseases such as the Black Plague and the Spanish Flu. In my view there are a few different types of people in this world. Some people are willing to accept harsh realities can occur in their lifetime while other people have a hard time believing that such events can occur . someone may also believe that harsh realties can occur but that it won’t happen to them . I tend to fall in the first category. I believe that harsh realities can occur in my lifetime. If you don’t fall into this category, it’s ok because this is a normal reaction. Many people don’t like to be uncomfortable. In many ways so many of us crave comfort.
Throw in a major generation defining event (say… COVID 19) and you can see how many people’s self created comfort zones are immediately disrupted. Add a healthy dose of the 24/7 news cycle and you’ve got quite the situation that can effect a positive person in a negative way.
I won’t lie, living through COVID has been extremely challenging. My hope with COVID Chronicles is to bring to light the impact COVID-19 has had on the transplant community. This blog series will be like nothing I have ever written before because the main subject matter is not my own transplant experience but it is event that is currently making history before our very eyes. As I embark on this new blog series, I hope you will join me as I take you on a journey through the COVID Chronicles.
Where were you durring the
Zero Hour of COVID-19?
There is a country music song by Allan Jackson called “Where Were You?” That song was written in response to September 11th . In the song Allan Jackson asks, “where were you when the world stopped turning that September day”. In essence, Jackson is asking where were you when 9/11 happened. Where were you when so much changed in a way that almost ensured that life as we know it would never be the same again. In this post I ask a similar question, where were you when COVID-19 went from being something on the other side of the world to being a global pandemic. Where were you during zero hour?
When this virus originally became a concern in the United States, I was enjoying my spring break. At the time, I was halfway through my first year of graduate studies and had was working to land a dream internship for the summer. In response to the COVID-19 outbreak, my university extended spring break for an additional week to determine a proper plan of action for students returning from break. They ultimately extended spring break an additional week. While having an extra week off of school was nice, I had work to do. I not only had to be ready to return to classes, but I also had to determine if I wanted to stay the extra week out of state or return home early. I ultimately chose to return home early and I am glad I did. When it all went down and I needed to act, I was able to. When zero hour came, I was ready.
Earlier in this post, I stated that I believe there are a few types of people in the world. That is, those who that are willing to accept harsh realities and those who have a hard time accepting that such realties can happen to them. In a way, I believe that my ability to accept harsh realities helped me act when zero hour came. Durring Zero Hour there was limited information and a difficult decision had to be made. While making the decision to leave Florida early was easy, what was about to happen next was not easy. When I returned I had no idea I would have to advocate for myself in a whole new way. I was able to do this because I had properly navigated COVID 19’s zero hour. When this happened everything was developing at light speed. There was little time to think, and just time to act. The first step in acting was recognizing the reality of the situation. Yes, COVID-19 changed everything. I do not believe the world will ever be the same. The truth of the matter is that COVID-19 was a generation defining event. We all know this to be true. However, it is how we react from here that is key. If you didn’t react the way you would have liked during the zero hour of COVID-19 that is understandable. However, no matter what, there is no way to go back in time and prevent this from happening. We can’t control the past but we can, to some degree, control the future.
History in the Making
On September 11, 2001, life in the United states changed forever. In the imidate aftermath of 9/11 many of us had questions. How could this happen? What did this mean for the future of the country? What did this mean for our own individual futures? In the process of asking those questions we as a nation woke up on 9/12 forever changed. On 9/12 many of us came together as one to morn the loss of those whose lives were taken too soon. At the same time, we also wondered what was next and what we could do. In response to 9/11 we as a people picked up the pen which writes history and took control of the narrative. In the twenty years since 9/11 a lot has changed and with the advent of COVID-19 our nation faces yet another generation defining event.
In closing I want to ask you a question. What will history write of us and how we responded to COVID-19? In the prelude to this series, I wrote that many have become consumed in anger, rage and fear. All of these reactions are valid. At the core of these feelings, I think we are all angry at the situation. We are angry at what we have lost because of COVID-19. Some people lost their jobs, family members, hope, purpose and much more. However, the story is not over. History is still being written and in many ways, I believe that we are all living in history as it happens. This is why the tag line of COVID Chronicles is “Documenting History”. Each of us has within us the power to be resilient. We have the power to recognize the situation for what it is. COVID-19 exists and there is nothing we can do to go back and prevent this whole thing from happening. As hard as it is, we must all pick up the pen that writes history and document it ourselves. We control the narrative. Let us not ask what history will write of us but rather how we will define history ourselves. That is what I hope to do with COVID Chronicles. What do we do now? That is a question that we will continue to explore.