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My journey – a Phoenix rising from the ashes of disease in splendor

Crushing Loneliness

I realized while driving to a doctor’s appointment alone the other day that I don’t have the crushing loneliness that plagued me in my relationship with my ex. Loneliness had a black, shadowy form and fierce persistence that would squeeze me every time I felt happy or a little better physically.

I paused, looked around and breathed deeply as I felt the thrum of the car underneath me. I didn’t feel it sitting on my chest crushing me….

Disconnected

Loneliness has haunted me my whole life in both smaller and larger ways. As a child I grew up feeling alone and lonely in my family, with my friends, and in my church. I had rare moments where I forgot about it – where I lost myself and life was easy and free for just a second. But those moments were like a cool, humidity free day in southern Texas – almost unheard of.

Instead I would stand in a room full of people I knew and feel disconnected. Even when I had someone who reached out and touched me it felt weird and scary. It was always awkward and often felt forced. At times I felt like I floated somewhere outside my own flesh. And, there were times when my voice sounded tinny, resonating with an echo like I was yelling down a cave searching for someone.

How connected I felt to those around me changed how grounded and inside my skin I felt. When I felt loved and bound to those around me, which did not happen until I was 15 years old, I felt closer to others and less lonely. But it always waxed and waned. In fact, it was so common that I stopped trying to get rid of the disconnection and loneliness. I knew it would grow or shrink on its own based on my life.

The Shadowy Force

At first, it hid in the shadows with my ex. It was still present but flitted behind the couch or to the shadows in the other room. It watched and waited and wanted to be closer. Then, as things got more tough with my ex and he began to lie to me, loneliness got closer and closer until it walked in stride with me on a daily basis and ultimately began sitting on my chest.

Once loneliness sat on me my breathing got tighter and tighter. My world started to shrink and no matter what I did it was breathing in my face and chomping at the edges of my memories. In the most intimate emotional moments it was still there staring back at me taking up more space and getting bigger and bigger with its black nothingness.

Surprised

This is why I was shocked that I could breathe freely. It’s why I was shocked that even though I am alone and making very hard choices, I don’t feel alone. Surprise lit up my consciousness when I looked at the depression and anxiety in my life and they were not drowned out by loneliness.

Being alone thrills me. Having friends delights me. Having a social life, such as it is with a chronic illness, has filled in the circle. I find myself happy and grateful and filled to the brim with liquid that heals and refreshes. I am no longer drowning in dark, black loneliness. Instead I am swimming in a natural spring that is giving me my life back.

Maybe I don’t feel lonely anymore because I had a dear friend say to me, “Sounds like your life is falling apart right now. Sometimes it has to do that so it can be built back up in a good way. You have a chance to start over.”

I looked around and realized she was right.

Winding pathway that curves right then straightens out, with on either side that are stretched to the sky and arch over the pathway. The trees are green with speckled light from the sun shining through onto the cement pathway.
Path at the Kansas City Arboretum Sculpture Garden

 

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Day 4 – Hobbies & My RA

This Beastly Disease

I was diagnosed with RA six years ago this week. A few months and a whole panic attack later, I was diagnosed with fibromyalgia. Then it was like my body was in a race to get just about every possible annoying and difficult autoimmune to complement the first and beastly RA. I am celiac, hypothyroid, have struggled with anemia, have some form of inflammatory arthritis in my spine, osteoarthritis in my hips and knees, herniated and bulging discs in both my neck and mid back, am close to fusing there also along with degenerative arthritis in my spine and some lovely neuropathy to boot.

Suffice it to say my body has been throwing awful fits for the last six years – like a child stuck in their terrible threes. Terrible two’s are a misnomer. Believe me folks, the terrible threes are worse. And so I feel like I have a toddler who likes to throw tantrums, scream, kick, and just fight me at every turn instead of a grown woman’s body. I live with pain 24/7. It is never a matter of “if” I am in pain, but how much and where it is focused.

And I know I am not the only one. So many of us have multiple autoimmune diseases, additional health complications, and we just suffer and struggle and fight our bodies on a daily basis trying to soothe and calm them the best way we know how.

Art is my Passion

This is where my hobbies come in. If you know me well, then you know several things about me – I am analytical and I am an artist. Art is my passion and my sanity. Art allows me to pull my attention away from my pain and focus on something relaxing and powerful. I get to get my hands dirty and in the process create something that I am proud of. Now, not everything is a masterpiece. But the attempts in between pieces helps to hone my skill set.

Many people nowadays do digital art. It is a huge field and it permeates everything that entertains us. But I stick to creating with my hands. I love how the paper feels sliding under my hand. I love how the shavings create a trail of my efforts that sit in a lovely pile beside me on the table. It makes me smile when I get my hands so dirty that I have to wash them after working on a piece of art. I can look up at it and know that I put a piece of myself on that paper. It is me looking out from that page. It reflects my mind and my heart that transcends words or discourse.

And, that is the amazing thing about creating art. I am definitely a talker, but there are times when words just are not enough. There is no full, good, or creative enough way to describe my moment with my disease. Many times I don’t have the energy to even try. When my life is really hard, when I get overwhelmed by what is happening I shut down. Creating art is my way of finding that expression in those lonely, empty moments.

Showing my Disease

More recently I have begun to focus on expressing moments of my disease. I fell down two steps over a year ago and it did unbelievable damage to my foot. At the time I was on a medication that did not control my disease well. So, I had pockets of fluid like marbles pop up. There were times when I had so much fluid in my feet it felt slippery and loose when I stepped down because my bones sloshed around in the fluid puffing them up like sausages. Right now it is so bad that I am putting up with the pain until I can’t anymore. Then, I have to have surgery where they shave, fuse, and pin things together to create stability. I created a piece at that time called electric foot about my fibromyalgia and the electric shooting pain that was tormenting me almost non-stop.

Drawing in colored pencil of a foot with blue, green, purple and lightning bolts on the skin
Electric pain – my foot on fire!

 

Another time, I was in such a bad RA flare that I couldn’t walk. I laid on the couch with tears streaming down my cheeks. I couldn’t speak, eat, take medication, or even focus on anything. My hips were catching – not allowing me to move more than a few inches in any direction. It has been bad before, but never so bad that I couldn’t speak or focus on watching TV to distract myself. I created a graphite piece at that time called “Pain runs down my face”. That piece did and still does speak volumes about me in that moment.

wp-image-2130387602jpg.jpg

 

Most recently, I created a piece that just doesn’t have a title. But, it is about the degeneration of my spine and my inability to do anything about it. There is a reference to Salvador Dali in the piece and it is done in charcoal, chalk, and some colored pencil. I have major damage to my spine. Those with spinal pain or disease or degeneration know how little can be done to help. It is not like a knee or a hip joint that can be replaced multiple times if need be. It just has to happen.

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Be Creative

I try to encourage as many folks as I can to be creative and find a hobby that speaks to you or even for you. I want others to know that being creative in any way is powerful and important. Knitting, stitching, crocheting, arts and crafts, photography, writing…whatever it is that helps you relax and calm down needs to be a regular part of your life when you have a chronic illness. RA makes life so hard. Having a hobby can give you pleasure and get you through the really rough times.

Day 3 – Partners, Vulnerability, and Trust

RA and its Effect

So, I am going to talk about partners in a very different way. I am going to let you into a conversation I have had many times with one of my best friends (who also has RA) about dating, relationships, and partners when you have a chronic illness.

We all know that having RA is a straight up bitch. There is no way getting around it. Nothing we do or say gets away from being affected by this disease. Depending on how severe it is it can affect stepping up on curbs, opening doors, sitting up in bed, getting up and down off the toilet, whether you can get through the day without a nap and more. If it goes systemic you are looking at increased risk of heart disease and attacks, there is increased likelihood of depression because of inflammation on the brain, weakened muscles because severe pain limits movement, surgeries, and….I really could just keep adding to this list. None of this even takes into consideration developing an additional autoimmune as a co-morbidity to RA.

I believe the biggest effect it has on intimate relationships is around vulnerability. We have moments where we cannot take care of ourselves. I have had my ex and my daughter help me get dressed and undressed. At one point, I was flaring so badly he helped change my clothes and had to lift me onto the bed because I was in so much pain and so swollen that I couldn’t do it. He had to see those times when I couldn’t blow dry my hair because I could not keep my arms raised above my head. He also saw me so exhausted from pain and inflammation that I slept all day and was still tired.

More recently, I have had some wild episodes because of my sensory overload issues. Migraines have caused a full-body flare so that I couldn’t tolerate light, sound, or to be touched. I probably would have hit him at some point when he brushed up against me, but it would hurt even more to make physical contact. One migraine was so bad I threw up for several days and could not take any of my medication for my RA or my fibro. It then took me four days to get over it because I was so stiff and sore.

Completely Naked

So, not being able to hide pain episodes or losing the ability to function and take care of yourself makes you totally exposed to whomever you end up with. And, because you cannot control these episodes it means that your partner has to have earned a very high level of trust from you. This person has to be honest, raw, and so compassionate. There is a delicate balance required here to keep a person with RA from feeling like a burden. And, because your lack of ability makes you feel even more vulnerable when your body is acting up, then it can truly become a sticky situation.

Because of this nakedness that we all experience, those of us with RA tend to hide aspects of our disease from a possible partner – rolling out over time different issues as levels of trust are earned. Many of us cannot ever get to the point where we show or talk about everything we are experiencing. Our mental health would not allow us to constantly discuss or tell about everything happening in our bodies. It would drag us down and make it hard to bounce back up.

So that partner has to take on a big responsibility – us at our weakest. That partner has to be kind to us when we cannot be kind to ourselves. That partner has to be willing to make changes at the last minute, help figure out workarounds, and really just enjoy being around us.

Also, that partner cannot only be out for themselves in a relationship. Brain fog is no joke. Neither is body fog. The last thing we need is some selfish jerk who takes advantage of our inability to think straight. We could so easily become prey in those situations. And, none of this even takes into consideration the sexual aspect and how we often struggle with body image.

Layers

So, partners are powerful and valuable and important. In the life of a person with RA, it can make or break you because of the level of openness and exposure that occurs simply because of our health issues. When we have mental health struggles on top of it, we feel that much more squeezed.

Next time you see us hesitate or constantly fret over seemingly simple relationship struggles or fears, please don’t downplay them. You must understand that the layers for us are much thicker than others ever deal with in their lifetimes. It takes us longer to trust and longer to enjoy what we find. Please be patient with us, for we are all searching for a rare and special kind of person.

Day 2 – Tips & Tricks for dealing with RA

Limitations 

One of the most frustrating aspects of dealing with this disease is learning you have limitations, which can compound and change over time. You cannot just power through a particularly painful day to get it all done anymore. You have to figure out unique and creative ways to accomplish those life tasks, and most often it will only be done on rheum time – when your body allows it.

It starts with little things like the way you open a door that is suddenly too heavy to handle. It moves on to posture, how you sit, and whether or not you can hold cups or objects in your hands. It includes dressing or undressing yourself, and even how well you can walk.

I’m a pretty practical person – if I need it I try to do it. I didn’t listen to my doctor in the beginning after my diagnosis and I have paid with unnecessary damage to my body since then. So I try to quell my stubbornness and do what needs to be done. I research and ask questions and try to figure out what has helped others so I can keep going.

Cooking

I love to cook. When I have a bad day I will try to cook even while in pain. I will push through just so I can be in the kitchen fussing over a dish to make it just right. I am creative in the kitchen – I have to be when I am celiac and cannot have dairy. Eating out often or regularly is a challenge due to options and the risk of cross-contamination.

On top of all this, I just refuse to believe that having dietary restrictions or modifications means that I have to eat terrible food. If I am going to eat it why can’t it be delicious

I consider myself a foodie. I love food, trying new food and discovering what others love to eat. I even enjoy watching chefs on TV. I just adore seeing the end result of food competitions. Food is fun and beautiful and when done right, it makes an event.

It’s Hard 

Let’s be real – cooking is so hard with an autoimmune disease. Standing, chopping, holding and carrying pans, and being able to serve food at the end after all the effort can be a challenge. If I happen to have enough energy once it’s done I find I don’t care how it looks. I wonder if it tastes good but that’s all I can muster.

I hate that this is part of my limitations. Other issues are easier to accept than this. Food is community and pleasure and good family memories. Dishes are memorable for years to come and I have had requests for the food I make – which makes me so proud.

I couldn’t just let this slip away from me. I had to figure out a way to get around my struggles, fatigue, my inability to stand for long. I had to keep my pain levels down so I could think clearly, taste clearly, and smell clearly. How could I make a dish better if I couldn’t do all those things?

So, I go for simple prep, easy assistive options, and bold flavors.

Options

The following energy saving steps help me make sure I can still cook.

  1. I choose simple, quick meals to make. I don’t have it in me to do something complicated and time consuming. I’ll do more if I can but simpler is better – fewer ingredients and fewer steps to completion.
  2. Buy precut veggies and meat. This costs a little extra and I can’t always do it. But it saves my hands to buy pork for carnitas instead of the whole steak that I have to section by hand. My process goes much faster if my veggies are at least partially chopped up so I don’t tire myself out.
  3. Simple cooking methods are best – baking, sauteing small amounts of meat at a time, using a crock pot, or cooking things that are quick like eggs. Even boiling them is good because you can get it started and sit while it boils.
  4. Marinating meat ahead of time allows me to sit and rest if need be so that lengthens how long I can spend cooking.
  5. If I do have to chop veggies I wash them all at once, then sit down on the couch and chop. Washing all at once removes excess walking back and forth. I love doing this because I don’t have to be on my feet and I can take my time. And sitting – well you can see the obvious rewards of that!
  6. Soup kits and meal kits are great jumping off points because you can just cook meat to add or modify the spices. These kits are meant to be easy and short and include everything you need.
  7. Before you start cooking try to have everything within reach – pans, measuring cups or spoons, directions, strainers, etc. Trust me – this really saves a lot of energy and keeps you from bending or reaching if you are starting to get tired in the middle of cooking.
  8. Invest in a good standing mat. My best friend has one that is so soft and comfie I keep threatening to steal it from her. It is great for doing dishes and cooking. She got it at Bed, Bath, & Beyond.
  9. Use a service like we have here called curbside with the H-E-B grocery company. You sign up for the list of groceries online and just arrive to pick them up. They will help you load them as well. Other services like Instacart will shop for you for a small fee, then deliver them to you. Even Uber and Lyft are in on it these days.
  10. I have gadgets for opening bottles, always have scissors on hand because bags are so hard to open, and those square textured jar openers are great. Don’t be afraid to invest in an automatic can opener either. That movement is very difficult for our hands so the extra help is most welcome.

Don’t be afraid to try…

I am sure you could probably add some great ideas and techniques to my list. I would love to hear them. The whole point is – don’t give up on something you love. There are lots of helpful gadgets out there to get you where you need to be. I have even had a person help me in the kitchen before with smaller tasks because the point is that I just want to be in there cooking.

Finally, ask other patients what they are doing. Our people are an amazing resource of creative ideas to get the job done no matter the task.

Day 1 – Emotional Stability & Me

Swinging Pendulum

Mental health is such a tricky subject for me as of late. I have felt like a person swinging on the tip of a pendulum with greasy hands that is about to slip off. It is hard to keep my bearings and my mind in the right spot. I just split with my husband and I no longer have my kids with me. Everything around me is shifting like tectonic plates rattling my life apart.

My body reacts to stress, weather, and its own ridiculous machinations. I have less stress because my ex is gone, but I have more stress because my kids are gone, nothing is solid – including my job, and everything is in transition. I live delicately with my own extremes just hoping that I do not fall off the tightrope. Up and down and up and down my emotions go. I am being squeezed in life like a water balloon surrounded and sat upon. At some point it feels like I will burst from emotional stress and physical pain.

In addition to all this turmoil, lovely new partners in life have stepped out of the shadows – anxiety and depression. I never knew they were there. Now, they are ever present and guiding my choices. Heart palpitations, racing thoughts, anxiety that gets more and more wound up like a child racing around the room after sucking down every bit of sugar possible – this is my life.

I live with fear that overwhelms my thoughts and all I can do is hold on until the surge is over – because I have no other choice. My mind and emotions get whipped into a tornado-like state causing destruction to my logic and stability. I can only hold on until the house is dropped on the witch and the ruby slippers appear on my feet.

Statistics say that about 40% of folks with RA struggle with depression – but I think that number is much larger. We often don’t feel safe or comfortable talking about our emotional state. I have struggled with that myself and I am much more open than most people with where I am.

Answers?

Oh hell no – you have come to the wrong place if you are looking for answers or a cure. I only have coping mechanisms and techniques to help me get through. I cannot tell you life will be easy with an autoimmune disease that constantly attacks your body. I cannot say your pain will ease or that your life will get easier. In fact, the choices and decisions just get harder and more challenging.

I cannot believe the difficult decisions I have had to make over the last six years – deciding if my kids will have enough food or I get the medication that allows me to work; pushing myself just a little more so I can meet my metrics or pay for it the next day by missing work; hiding my pain and sucking up the ache inside my mind so I can feign normalcy, or being honest about the pain that makes me unable to sit all day while inflammation licks the bones in my back with searing pain.

Do I reveal my grisly struggle sooner rather than later to those I meet, or do I wait until the last minute when I feel like they are more emotionally invested in me? How much do I really talk about the pain? Am I a burden? Will the loneliness ever become easier to handle? How much guilt can I wrangle with when I continuously have to cancel or say no to social events? Is it ever possible for someone without an autoimmune disease to truly understand the severity of my daily struggle? Can an outsider truly understand what it feels like to wake up inflamed and out of breath so that lifting the hair dryer after a shower makes my arms tired like I just lifted weights? Will the burning and swelling in my shoulder joints ever translate to another person’s reality?

I honestly don’t know.

Friends & Help

All I know is I have friends and family. Amazing people who love me and encourage me and hold my hand. I get through my days because I ask for help and humbly thank those who are willing to do so. I manage because I am learning to listen to my body – including my emotions – and do what is right for me. I have to take care of myself and I know I cannot do it alone. When pain fogs my brain my best friends are always there to lovingly support me. When ache distracts me from what is important, my friends wipe that mirror clean so I can see clearly.

With the help of a therapist I am learning that putting my health first is not selfish. It is okay to say no and to make choices that are best for me – even in the face of another person’s loss.  I need that outside set of eyes and ears right now because my anxiety and depression are dragging me into the bushes. I need someone to  help me discover the right path, and teach me how to treat myself better instead of letting guilt and shame and anger ruin me.

It is hard and scary to know this disease will never go away. It is ominous to realize that destruction of my joints and continuous pain are my existence. Taking naps are a priority when I am tired and my body aches. Pain pills are now and will always be a part of my future.

One Life

But I only have one life to live. I will not miss it because I am bitter or angry. I try to deal with what is happening and make good choices because this is all I have. I do not want to look back over my life and see ruin and destruction. I want good times, good memories, and good love. So, I push through. I push on. I learn and I lean on those I love. That is how I take care of my mental health and live with RA.

Monet’s obsession with lillies

These images are part of the view from my early morning walk with my best friend & arthritis doggie Edgar. He was really excited to go for a walk again because we missed two days due to the behemoth storm that rolled through my city and flooded areas that never get flooded.

I felt that monster the day before and the day of – exhaustion, fatigue, shortness of breath and the inability to carry a whole lot or hold anything for too long. Even my bag and cup became too much. Inflammation was making its mark and screaming in my ear. It latched onto my bones like sandbags that were sucking me under the quicksand.

So Edgar sensed my waning strength and waited patiently to walk again.

It was magnificent. Despite the 95% humidity it was relaxing and refreshing to be outside. Every time I got caught up in the thunderclap of thoughts in my head, I’d look up to recenter myself. Immediately it’d involuntarily cause me to take a deep breath and smile.

The sky is the ultimate piece of art, don’t you think? I always wistfully wish I could capture the magnificent light, the power of the clouds, and the light that thrills me. Maybe someday I will. In the meantime, I understand Monet’s obsession with the lillies. His bent towards capturing their astounding beauty in 250 paintings licks my ears knowingly. Spending over 30 years in the quest to capture changing light and fleeting beauty makes sense to me. Who wouldn’t want to try to capture that breathtaking moment to share with another, despite the fact that it trickles away in the time spent doing so?

I would love to hear from you – what do you find breathtakingly beautiful? What do you want to capture and share with another despite your pain or circumstances?

Being Disabled Is a Job

“We all have limitations, we just need to stop defining those limitations based solely on the experience of able-bodied people.”

An absolutely brilliant piece of work that is thoughtful, insightful, and a needed challenge to society’s understanding of the value of a disabled person and what constitutes work. I really love Charis’ work. She is definitely worth a follow!

BeingCharis

I’ve heard some say disability benefits are unnecessary hand-outs for people who should just die off, and why should hard-working people foot the bill for people who are lazy, whose lives mean nothing?

The disability process itself mirrors these same sentiments – the 3-5 years (average) process for applying, fighting for, and receiving disability (SSI or SSDI) in the USA is by its nature a grueling process, with analysts hired to deny applicants not once, but twice (standard procedure), forcing the applicant to appeal their case twice over several months before a hearing is granted, which then takes years to schedule due to a shortage of judges. It is a process intended to force people to give up.

You usually have to be literally dying to be automatically granted disability in the USA.

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A Sad Dad’s Day

So, here I am in 2017 and I feel sad and depressed on Father’s Day.

Perhaps I am too old for this. Perhaps I should be smarter or stronger about this day or perhaps I should just be able to simply walk away and be okay – reminding myself that this is just another day. But, I can’t do that.

For the past six years, I have worked hard to make Father’s Day amazing for my husband and show him that despite his lack of a father or mine that this day can still be wonderful, full of lovely memories with our kids. The kids only realized yesterday what today was because I’ve been too stressed (insert – in too much pain) to plan this ahead of time. But, after years of working with them to make holidays special, learning to show love and appreciation for those we care about – they jumped into action on their own to celebrate him. My daughter painted for him and my son made a homemade card. Then, when we were at the store yesterday my son and I made my husband and my daughter go somewhere else so we could pick out a cheap movie from the discount bin just for him. We don’t have a lot of money right now but they always know that homemade cards, special drawings, and simple presents from the heart have more value than anything store bought.

Today, my husband is happy. Our home life is laid back, easy-going, and simple. We spend lots of time together – with pleasure. We cultivate an atmosphere of honesty and

Statue of a Chinese man in robes with long hair and hands clasped together. The robes go down to the ground and cover his feet so we don't see them. He has a long beard and mustache.
Old Man – Statue from unknown artist at the Kansas City Arboretum Sculpture Garden

trust. Things are peaceful and loving in a way that neither of us experienced growing up. Today, that doesn’t detract from my sadness.

I had given up long ago on having a father that was interested, or even wanted me. My brothers were always argued over by my parents. I can remember my mother screaming at my dad over the phone telling him he had to take me and my sister too for visitation rights. But, all that accomplished was my dad picking us up then dropping us off with my aunt while he had my brothers. For my mom’s part, she spent my whole childhood making people feel sorry for her and trying to pawn us off on others so she could be alone – sometimes for weeks at a time. She made it very clear that she didn’t want us and we kept her from fulfilling her dreams. She actually said those words on multiple occasions. My dad, on the other hand, was too deep in the throes of addiction to care for anyone or anything outside of himself. The four of us were just incidental, accidental pawns in either of their lives.

I accepted the state of my relationship with dad a long time ago. I had grieved what I wasn’t getting and I moved on with the very real knowledge that he wasn’t a part of my daily life and had no real interest in doing so if it didn’t do something for him. I was only important if or when he needed something from me, which was almost never. So, what now?

Now, he showed up about a year ago via social media saying he wanted something between us. I was cautious and distant. I talked to him and told him about my health issues up front. I didn’t mince words. As someone with several chronic health issues and who is in constant pain, I just don’t have time for that anymore. With anyone. I felt…..numb. Unsure and numb without a clue how to navigate the situation or if it was going to last.

It didn’t last. He unfriended me months later after I wasn’t pandering after him and praising him and falling all over him for suddenly showing up and showing partial interest. I tried sending him a few messages but wasn’t interested in chasing him. It was clear from our relationship that he wanted just that – I was supposed to fall all over him like a little girl who missed her daddy and didn’t question anything. I was supposed to hum sweetly to the tune that this pied piper was making, never noticing that I was heading out of town to be drowned and disposed of.

Those who know me understand something about me – I don’t whistle and sing while blindly following someone. I am inquisitive, questioning, and highly analytical. I notice emotions and shifts in conversation that are so subtle they aren’t usually recognized. I pick up on insinuations, underhanded digs that are hard to trace, and connections between the people with whom I am speaking that surprise folks later on down the road. Suffice it to say, I wasn’t dancing to his tune. And, it’s been months since I had heard from him.

Then, suddenly I saw that he had a new Facebook account. My sister told me he does that regularly but I knew he had that same account he originally contacted me from for several years. He didn’t always post and isn’t much into social media but does use it to keep track of family now and then. After that, he friend requested me again – a few days before Father’s Day.

I believe that people can change. I believe in the power of redemption, the power of love, and the power of kindness and compassion. I think that if anyone wants to fulfill the goodness and love that resides in him or her, it may take work but it can be done. I believe each of us has power and goodness that just needs to be cultivated with the right choices and the right amount of work. But I also believe in being honest so that you can deal with life as it is and not waste time chasing a scenario that may never happen.

Being contacted a few days before Father’s Day proved to be just another attempt to get praise and admiration from a relationship that he never worked for or cultivated. I ignored that request and have no desire at this point to change my decision. I think I will always carry a measure of sadness with me at the loss of what I didn’t have. Now, I will carry with me the loss of what will never be. I had that deep down secret hope that as adults it might be different. But, if a person is unwilling to change then I cannot force a path that shouldn’t be trod upon.

Winding pathway that curves right then straightens out, with on either side that are stretched to the sky and arch over the pathway. The trees are green with speckled light from the sun shining through onto the cement pathway.
Path at the Kansas City Arboretum Sculpture Garden

At the end of all this, I will get up and go spend time with my family. I will make more good memories on this day, but I won’t ignore the sadness that I carry. It prods me to be a better wife, mother, friend, and even stranger on a regular basis. The loss and pain in my life have made me a better person. That is all I can hope for.

 

Dream a Little Different: Part One

A really great blog about how we have choices to make that really aren’t choices when we live with a chronic illness. Very well written, solid voice and so relateable. I hope you enjoy it as much ad I have!

A CALCULATED RISK

***This post was written on May 13, 2017. The prospective surgery and its aftermath are now a moot point. Nevertheless, this piece was written within the context of its time and bears posting because it also happened, too.***

Alternatively Titled: There.

This is what they want.

Logically, I get it. I’m there. It makes enough sense.

Psychologically, it is 4:45pm, February 2nd, 2016 and I’m desperately trying to get anyone to say no, we’re not going forward with this heart, so that I don’t have to.

Psychologically, it is being strapped to the bed with 1 inch diameter pipes coming out of my chest, pumps stemming from my pelvis, tubes flopping inconsiderately out of holes above my belly button.

Psychologically, it is a choice, to say no to a scalpel, that I have never, ever been given in my life.

Putting in a defibrillator was never my decision. I had…

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