I have many clear childhood memories of boldly going into a body of water without bothering to check the temperature and not being concerned that I was going into hypothermia. there was only the joy of water around my body, holding me up, supporting my weight. Today is a whole different story.
What is the water temp? How much chlorine is added? How often is the pool cleaned? Is there privacy? Who is splashing? the list of demands goes on. Not because I am a prima donna who needs her little wishes catered to.
After my brain surgery I noticed that I had a temperature issue. My head and neck will be HOT but shoulders and below are COLD. Thankfully, my family is very understanding of my situation and with the help of Solar Energy, the house stays cool and the pool stays warm.
The most obvious question I get is why heat a pool in the desert? This has to do with air and water temperatures. I can’t get into very cold or hot water without risking a seizure. It may be 95° and sunny, but the water is only 72°. While it feels refreshing, that 23° difference can cause such a strong nerve reaction that my brain and body seize.
On the other side of the fence, I come in the house, and I need it cool on my head gets too hot. When that happens with no relief, I end up naked and vomiting as my headache spirals out of control. I use ice packs, and I drink water, but being hot is its own special suffering. I never knew it could suck so much, but every so often, I am again reminded.
As with most things, this would not bother me so much if I was able to help pay for the increase in power, gas, and water. We got solar a few years ago, and it’s been great because I use the AC like a beast of burden and we heat the pool until It is hot enough to stay above 92°.
I am very aware of and thankful for this privilege because no one realized 20 years ago how useful the pool upgrade would be. Now, it is very useful and beneficial to my daily life in the Summer.
If you have access to a pool, try it out and see how it can help you. Indoor pools are usually heated as far as I understand. I enjoy floating and allowing my head to hurt while my body feels good and I suspect many types of pain can benefit from being in water that doesn’t cause muscle contractions.
Next time you hear about the outrageous demands of another person, take a moment to consider the situation they might be in. Then mind your business or offer to help.
Last week I was leaving church, packing my stuff in the truck, when a familiar voice greeted me from behind. I turned and exchanged pleasantries and then she asked how I was doing.
This is a loaded question. People want me to say that I am doing well, but they ALSO want the truth. So, when I choose truth, I am met with resistance. First off, God is good, So it makes no sense that I can not feel well. Second, I look like I feel good.
See, when I have to be in front of people speaking on teaching, I try not to look like I have been living in my closet on Rom-coms and vodka. Of couse I get clean, wear nicer clothes, and even put on my “pleasant” face and persona. She could not help but tell me how I was actually feeling because, three, I have lost 150+ lbs. Not being fat actually equates to happiness to this type of person.
I felt the anger rising and my mom caught a glimpse and knew I was soon going to explain a little something to this woman. I was rushed into the truck and left feeling like people see me as some medical miracle when they don’t realize simple things like I have to take medicine to know when to pee.
The sad truth is that my pain is always going to cause someone else discomfort so society puts the onus on me to adjust my expression, even if it means lying in reply. It’s how some Christians operate. If everything isn’t hunky-dory then it is simply my failure to exist properly.
My life has come to a place where I am ready to retire from my self. None of the people who used to know me really understand what I have turned into. I am a skinnier version of my depressed self. I wish the accident would have been the end. My life has just declined since then and no matter how many roses I plant, I can smell the heavy decay of my hopes and dreams.
The past few weeks have been punctuated by an annoying and at times unbearable headache. I have been trying to live intuitively with this beast. When the pain begins to increase I slow onceace my activity so that I don’t make it worse.
The past few days have been accentuated by disorderd sleeping. the pain seems to dull my need to go to bed. Even if my body is tired, I willlie awake thinking about how to adequately describe my headache in case I need to.
A sleeping aid seems like it would be appropriate but I already have a uproblem with getting up and downg things when I should be asleep. My favorite activity is night snacking. Especially if I am under stress…like chronic pain.
In the past year I have made aupointto get off of every medication that I can. Often that meant dealing with a lifestyle change, but I feel alot better without having a bowl of meds for breakfast. Of course there are some meds that I need regardless and I am very thankful to have the privilige to get everything that I need.
Nights like tonight are fairly rare now because I tend to keep a tight sleep and wake schedule. My body has not responded to the shifting weather favorably, so I find myself needing to sleep in the middle of the day, at times for many hours. Intern, I watch my bedtime pass and welcome the coming day because I am wide awake.
Wide enough to need a cup of coffee because my body thinks we are getting started again. I would disagree but I have seen a few sunrises before bed recently. Then I wake up shortly after and I am getting more and more tired, so I drink more coffee.
l am fairly sure that this is a phase that one day I will get out of in the next clay or so. I find these late hours to be such an interesting time because the noise of the day does not disturb the thought process. Most people are asleep and thisis when I realize how much I love coffee!
It finally happened! I let go of the last part of my life from the Before Time. The past six years have forced me into change whether or not I actually embrace it. I held tight to my place and percieved duties at church. Last week the dissonance of what was happening versus what I was expecting exploded my brain.
The actual details aren’t important: I am living in 2016 and no one else is. Things have changed all around me and it’s like I only get glimpses of reality when I am way off base. It’s been 6 years and I can’t remember people that I meet. I often have to check to see if I am home alone or with someone. Church became a place to be useful. It is the only place where I still had something to do. Honestly, it might have become a source of pride because I had nothing left to call my own. My work at church is not supposed to be to gratify my ego.
Five years ago I would have blamed a whole crow of people for what I am feeling. Thankfully, I realize that I am responsible changing myself when I cannot change the circumstance. I have let go of everything but my most basic, required ministry at the church. Teaching is all I do outside of my regular attendance. I am happy right now because sometimes we burden ourselves.
I will say that a needed to break so that I could find away forward. Now I feel less sure of the road ahead but better prepared for whatever lies ahead. I know my final destination, it’s time to enjoy the journey.
I miss the freedom of driving, horsebackriding, climbing, working a regular job, and having a functional body. I love blogging and watercolor. I love writing. There is still so much to love, so it’s time I bid my final farewell to the dreams of my past and run toward an unknown future. It may be bad or painful or good and beautiful. Probably a bit of both.
I did not draw this today but it is an accurate representation of how I feel right now. The fact that my head is still on my body is some kind of miracle. It feels like the pain should have vaporized it by now.
My Before Time had some headaches, but it wasn’t really an issue until began working on cars. It is weird to look back at the level of frustration a minor headache can cause. Ihave been riding this headache for some days now and I am struggling to get anything done. Thank God I can still struggle.
People tend to think that there is a cure for almost everything until their lives are touched by struggle. Everyone has an answer until the problem is their own. I am not casting Stones because before my accident I was the same way. One of the reasons I began blogging was to try to make my outrageous experiences known to people so they wouldn’t be as surprised or disappointed when they had to go through something.
I often wonder what I have left to say or give, but I can spread hope and educate people about my condition, Chiari Malformation. It is usually characterized by a strong occipital headache. There are plenty of other symptoms but the headache is the Hallmark.
I find that the most amazing part of my headaches is how vastly different the pain can feel from one day to the next. Today my head feels like it is exploding off of my neck every so often then a constant dull pain until the next headsplosion. Tommorrow it could feel like a burning pickaxe is lodged in my head. Next day might be baseball battery.
In six years I have learned that the pain is going to be there and there will be times I have to push through it to do what needs to get done. There will be times when all I can do is lie down and breathe. Thankfully my faith is stronger than my pain. I long for the day when my pain is all gone but until then I will take my life one moment at a time.
The past six years have been a trial. The last two years have been inconvenient. The last nine months has solidified the process of changing and challenging myself. In 2020 I had to demolish the hollow, toxic foundation I had built for myself. It caused me to be able to look at who I truely am without judgment.
2021 allowed me to sift through the ruins of who I was and what I had become. I have been able to lay parts of myself to rest. Mountain Climbing Michelle is gone, but I still love seeing them! I am thankful that I took the time to go things I enjoy.
Now it is time to enjoy other things like art and my dog. I am discovering what I am physically capable of and since I have lost so much weight I can do so much more. You know what I have trouble doing? Dealing with people talk who about how good I look.
I’d prefer they say it behind my back because people don’tseem to understand the lack with which I care. about their opinions of my body or self. Why domy looks attract SO much attention when I am usually trying to mind my own business.
Guy I liked told my mom that he noticed I looked nice. How nice! Did he happen to notice a few weeks ago when I was a bit fatter? Or months ago when I was a lot fatter? He did try to speak to me but I just nodded and went on. After being call but ignored by men after my accident I don’t see myself having much time for one now that my body “looks” good again. At least not someone I already know.
I wish I could say that I love wearing a smaller singe but I miss the anonymity being big gave me. No one really cared. People didn’t stare at me like a freak. I was allowed to exist in my space, however large it was.
Thing is, my heart is back to normal. I am released from the cardiologist. My sleep apnea has improved. Being able to breathe is awesome and we cannot say otherwise. My body can withstand a mile and a half walk with the dog. I still get debilitating headaches, but that is life. I have made so many accomplishments but all people comment on is a body that was operated on and looks good because of malnutrition, but people don’t think of that stuff.
I was told to give grace to the people who say stupid things and move on. Even say, “thankyou!”
The maintain of prude in me cannot even fathom this but I think it will probably get me away from most pople the quickest. Maybe one day I can learn how to accept any old compliment because God did most of the work anyway. My small part can be recognized by anyone, but the glory is still God’s. Maybe showing it this way will help me to realize that other people’s thought are not my burden, whether or not they are directed at me.
I can end at a thanks and move forward. There is no way for me to control what people say, even if I really want to! Self- Control is an area of my life that needs attention and this is probably a good time to start working on it. I want to enjoy my life and I just can’t if I’m yelling at everyone.
Since new babies became a thing, milestones have been set to track their progression in every area of life. Eventually it becomes kindergarten then homecoming, prom, college, and by this point we have grabbed the reins and have set our own desired goals to meet.
I, too, had set my goals. I worked from a young age to become independant and that would eventually become my millstone. I just worked and worked to become the nothing I currently feel like.
When I graduated high school, I wanted to take a gear off and have fun before beginning my journey into law. When my brother was murdered I figured I could just continue my plans in another city…Where I got pregnant.
I had also grown to love cars, so I went to school to be a mechanic instead of a lawyer. However, I couldn’t finish because my pregnancy was a liability When working on live diesel engines so that was over. I was so mad at myself but I also don’t believe in aborting a healthy baby. I was happy to give the child up. My mother convinced me to keep my child. It was that day that I figured this is where the end begins.
My sister took care of my child while I worked and when I went out. I never really had many friends because I was trying to be a good mom and be with my child when I wasn’t at work. I dated, but was never so serious because my child did not need to be involved in the messes I got into. I was actually drama free, but I know how children can change a relationship dynamic.
I had to wait to go school but by the time I was ready to prepare for life again I had brain surgery. I lost everything that makes being an adult worth it. My memory does not make memories well if at all. I can’t drive. I can’t live alone.
People look at my life and see some ridiculous overcoming story. If I could just lay down and die I would, but time keeps moving forward and I am caught in the mix. What am I supposed to do?
I deal with people dying and some people think that it is somehow more noble than any other act of service in the Bible. Iam a minister and this happens to bethe area I am in. I also write Bible studies because it is the most logical thing to do with the knowledge I have aquired throughout my life.
When I think of the things I wanted to do when I was young I am saddened that my life looks nothing like what I imagined. I assumed that I would have a good paying job, a Jeep, a great boyfriend, and a full social calendar so I could spend my free time with the people I love. Then at night I would come home to my quiet little house and read briefings and depositions.
I saw the dumpster fire that was my parents’ marriage and decided that men were good for fun and food, children were overrated, and if I could take care of myself I would never be controlled by another person. I did everything I could in school to get ahead and get closer to my dream reality.
Ministry is the only thing I have going on aside from writing. While it makes me feel good to help others, I am just carrying out my calling. I don’t get anything out of it aside from a good feeling.
Life is not sustained on good feelings though. Try to use a good feeling to pay your mortgage. You won’t have a house for long. Nothing is free in society.
Now at 40 I look at my life and I am just sad for myself. I had plenty of opportunities to go places, try exciting opportunities. Probably a decent relationship could have happened if I hadn’t been so scared of a man hurting my daughter and making her feel like I felt as a child. Stability seemed more safe because there was no “DAD” in the picture. I felt the weight of every decision.
Now. She is an adult, starting her own life and I am living in my old bedroom. I have nothing. If I die tonight, my highest value item is a dog because he is purebred. My greatest accomplishment is that I kept a human child alive to adulthood. My legacy is a medical disaster that I hoped don’t pass down.
The worst part of it all is that even if I had accomplished everything and had the means, I wouldn’t be able to live alone and enjoy my life because my brain is damaged and I am a terrible liability. I will never get to feel independant again and that hurts my heart. I wasted my life trying to be careful and now I have nothing to Show for the past 40 years except an adult child. That is good enough for some people, but cats also have grown children so, whatever.
I know someone reading this is like, “Michelle, you are only 40!”
Yes, I hope to be dead in less than 20 years. God forbid I have to be here longer than that! 40 with Chronic pain means that I don’t enjoy life, I deal with it. That is not to say I am not immensely blessed, I have more than I deserve or need. I am just surrounded by the labor of another person. In someone else’s home. Eating off of plates that aren’t mine. Buying things with someone else’s money. Being the leach I abhor is eating me alive.
Still, I am thankful that while I am here I have the opportunity to do things that help other people get throng tough times. I try to find moments of happiness in my life and they are enough to give me hope that I won’t be here suffering long. I will be happy if I get to heaven and my only accomplishment was keeping someone alive but it’s enough.
As a Christian this is my biggest struggle. I just want to feel like I have made something of my life and I have not. I worked. I tried. At 40 I feel like a failure because the ONE thing I NEVER wanted was a baby yet it was the only thing I did. Why?!
At this point there are no more dreams or “future” in my mind, I only want to finish whatever I need to so I can get gone from this body. I just try to be cheerful when I minster so that I can at least accomplish something for someone in need.
By January @2021 I knew that I was unable to sustain the rate of weight gain and energy loss, but there would probably always be some have damage. PhlapJak was brought home to address the neurological issues.
In February I decided to speak with my doctor about the possibility of weight loss surgeryand he agreed and the process was started. This involved blood tests, BMI results, meetings, psych evaluation, more meetings, and on May 4 I got a vertical gastric sleeve.
A lot of the medical process is broken down and explained, the food-mind connection is explored and talked about. I was fairly certain that my team had explained everything of relevance and I was confident going into and after the surgery.
To be clear, the excess weight was helping compress a disc in my back and a nerve in my left leg. I was was having increasing difficulty standing, walking, and breathing. My body was filled with pain and I do not take surgery lightly.
As my doctors saw the weight came off and my energy and activity level improve I got happy about the weight loss. When my cardiologist released me because all of my heart punching has come well within normal range, I was excited. When my PCP told me that I was not in tachycardia in his office forthe first time in 2 years I was extatic!
I’ve worn my clothes until they are hanging off of me because I don’t have money to keep renewing my wardrobe, but after I had lost 100 lbs it was time to get a few things. It felt nice to see my waist again, but I guess I was not ready for everyone else to see.
I went to church and all upeople see now is weightloss. they think that maybe NOW that I am smaller I am fixed. My headaches are just as bad as before, but I guess I look better with them now? People asked my secret and were surprised I went for surgery, not that it is their business but someone has to talk to the masses about this stufff. I want to be open with people to help stop these ridiculous assumptions.
It’s actually weird that people only focus on what they see. I suppose my own situation has taught me to compliment jewelry or hair but leave people’s bodies alone. Men don’t need to know that I am looking at their bulging muscles, because that has nothing to do with me caring about them. I don’t associate big muscles with small brains but if I did church would not be the place to let them know I feel that way.
It isn’t that I do not care how my body looks or how I present myself in public. I simply don’t care to know the thoughts of minds small enough to think I care what they think about my weightloss. I didn’t choose to live a life of malnutrition to satisfy the eyes of the men and women around me, I’m trying to live and be mobile as long as possible.
While I feel comfortable in fitted clothes I don’t want to be constantly stared at and commented to because of my weightloss. I have so much going on for me right now, but look how gorgeous I am now!
December is such a shange month now. I used to look forward to this time of year. The halls would be decked. The tree would be trimmed. Baking Sugar would sweeten the air. It wasa whole capule that was captured every year to build more memories upon.
Now, December is not much different from any other month. Now it isn’t even colder. Still, it is the end of another year and I tend to sweep up the pieces of this year and trash them in expectation of more mess for the coming year. I am trying to process what I recall of the year and find a way to move into next year gentIy.
At the beginning of each year I try to find one way to refine myself. I believe 2021 was to not give up on myself. I gave up on everyone else, but I’m still here baby! I even got mplfaring to remindupelf to not give up. After losing 100 pounds the ring is falling off and it is time to set a new goal for myself.
My project for 2022 is called “the Law of Love” and it is based off of Luke 6:27-38 so it seems the logical thing to do is just to try to live out the law of love in my everyday life and really see how that changes my relationship with Good and with people.
I think that there is something I am missing about life and I want to know if I can help myselfby being more loving toward others. Is there really something worth the energy and effort to love. I realize that I see people as objects or projects. It’s weird because I love these people And I would do anything I could to help them but then they also take no spacein my heart permanently. I love them as a fellow minister or another christian or as auperson, but never as a friend.
Maybe that is what I have been missing. I listen to people because my ministry dictates that I be an open ear and a helping hand but not that I open myself up and make it a two -way street. If I am not activity working with esomove or helping someone, it is like wasted communication with that uperson. I have no emotional Investment investment in other people and while it is very drama free it is lovely and it sucks.
I have spent a good portion of this year deconstructing my foundational beliefs and I am starting at the bottom trying to igive this all out. I can’t really work, but I can write, so I am kneelup in a new book. I have always tried to please someoneelse and it never worked, so I have been trying to figure out how I make me happy. I’m my own eyes, what is perfection?
Who am I going to be now? This is not a place I wanted to find myself at forty years old, but here I am and this is what I know: I love Jesus, my family is awesome, blue is my color, the world should fear me because I have a beast inside that is ready to turn the world upsidedown!
Today is one of those cool days that marks the end of a month but the beginning of the week! Not sure why I care aboutthese things but I do. It just so happens that October is when I spend time each day dawing pictures from creative prompts. I have done this for maybe five years now and this morning I drew my final picture for the month.
November brings its own daily challenge. It is National Novel Writing Month and this is probably my fifth year. I have written several novels and books but they are not ready to meet the world. this year I plan to publish my book because I think it will be a fun way to discuss all manners of illness.
It will be written like a feild guide so that will add to the charm. I have also decided to push my own boundaries and illustrate the book with watercolor pictures of Stickfigure Michelle.
I have decided to embrace writing because in the end itis cathartic and I need a way toget my feelings out without going to prison. Of course I will still do my arts and crafts and music is never far from my heart. Changes don’t mean that nothing stays the same, right?
The changes in my life have been so major and sofast that it has been difficult to try to look toward a future. Will there be pain clay after day? Will the seenjones ever stop? Will I be able to drive again? Contending with avague future means that I have to be flexible and reasonable. I have never been either of these things.
Now that my health is getting into maintenance I can focus on my personal life. Many of my previous goals are now unattainable and that is ok. Sure, it took six years, but as I learned, we can move foreward in a different direction. I am not going to me a music Psychologist and while it sucks, I know that there are areas that I can be just as effective in. they are not the places that I dreamed of they are the places where I never thought to look. there are parts of myself that I burned many years ago that still remain unearthed. Maybe it is time to excavate my mind and see where the newly rediscoverd contents will take me.
Obviously, I will be sharing my journey because that is the whole point! If you feel likeyour have hidden a part of yourself that your really miss, don’t be afraid or ashamed to go back and begin again. Laugh at your mistakes and jiuy in your triumphs no matter how small. They will increase in singe and number. The world may not know your name and you may have guilded bank accounts but if you can marea living doing what you love then you are definitly winning.
I have no idea how all of this will play out. I pray that I find my literary farting and am able to help a lot of upeople were feel misplaced in life due to an uncooperative body. If everyone speaks out about their point of view maybe more people will be inspired to do more to help others.
My goal is to reach the lonely and misunderstood people who suffer arom Chronic conditions that severely affect life. Wish me luck!
chiariconversations 