I just want to remind you of something that may have slipped your mind this morning, or this week, or this month since the seasons of life are changing and the colder months can cast a darker, colder shadow at times.
Don’t forget the challenges which seemed impossible…when you said “there is no way I can get through this” but you did, and you are. Don’t ever forget.
Don’t forget when you had experienced all of the torture you thought you could shoulder. Don’t forget when heartbreak, physical pain, and sleepless nights pushed you past your breaking point. You said, “I can’t endure this nightmare for one more moment.”
Remember when you were ready to forget it all?
How are you still here after everything you’ve been through?
Don’t forget how you made it!
As chronic illness sufferers, we are so often reminded of something that I believe is of great detriment to our well being. When well people tell us that our health struggles, our personal challenges, the great storms of our lives will some day be of use. I’ve grown to loathe this idea. I realize that it is meant to be an encouragement, however, it causes myself and my brothers and sisters in pain deeper despair. “Some day?” It’s as though they are reminding us that we don’t have as much to give until we are restored to health. I completely reject anything of the sort!
I believe that you and I are worthy and valuable just as we are. Yes, right now. You were no more “special” when your nervous system was working properly, but I can attest that the memory of wellness certainly has a shining halo around it.
We feel so small and insignificant after illness devours our lives, and those we love in its wake. There is no “after the tsunami lifts” with chronic illness, as we are always seeking out cover, our safe places are constantly being destroyed, and the physical and emotional turmoil can feel endless. My only peace is in God, a relationship which has grown inside of my own tsunami.
This is a message I try to frequent on this page because I struggle so deeply with the whispers that my life isn’t enough, I should be doing more, and I would be so much more valuable as a person if only my body worked again. This is my pride speaking!
In those moments when the whispers win, I have forgotten how many opportunities I’m supplied with to have an impact, even in the very midst of my personal battles. Maybe, and probably because of my personal struggles, I’ve been allowed these chances. What seemingly small opportunities and connections might you be taking for granted in your own life?
The next time someone reminds you that all the pain you are battling will be worth something some day, please remind them that pain doesn’t have to stay hidden, and that your time traveling the path of illness isn’t a waste.
I don’t believe we must wait until we are perfect for our lives to have value. If that’s true, then we will all be waiting forever! Are we meant to see the silver lining in every storm before God can give us purpose through it? Even in the very midst of the battle, your story, your experience, your willingness to relate to and comfort others is so rare and valuable that it stands out among the noise and busy crowded world we live in.
It’s so easy to withdraw when the going gets tough. In time, however, we feel so marginalized and isolated. You do have a voice. Your story, your purpose, your personal gifts matter- and you are needed in this world.
We undervalue the quiet connections, asking others how they are and listening in return, sending a note by mail to a struggling friend, or letting someone know they have been in your prayers. Society does not measure these acts as successes, but what if you redefine success? You may have very little energy to spare, but what you have to share is precious.
I believe God’s measure of success looks much different than our own. We become so focused on perfection, staying hidden until the right moment to present ourselves shiny and clean, having overcome our difficult and uncomfortable circumstances. This is what the rest of the world applauds. But don’t we each have unique and valuable lessons to share that come with the daily perseverance of ongoing disease?
It’s one thing to be crippled by a body that relentlessly fights against you, but please don’t believe the lie that you are less-than or it will cripple your spirit.
I got a new working phone yesterday for my birthday! Woot woot!
I’m still playing around with it, but I have to say that it’s kind of stingy on the emoticons.
You don’t realize how far down the emoticon rabbit hole you’ve gone until all of those little faces are suddenly ripped from your life like a big yellow blur. (Insert sad face here)
Goodbye winky face: you helped me keep my foot out of my mouth so, so, so many times. (insert yikes face here) Now, I’ll have to rely on the ‘LOL’ to save me from myself.
Farewell Tear face: How will anyone know I’m sad? Words just don’t do what one little tear face can.
Mr. Smiley Face, I will miss you the most. Your good old classic “I’m smiling” demeanor may be overused, may at times be the inappropriate emoticon for people to utilize and get on my nerves (rolling eyes face), but you never get old. Keep on smiling, Mr. Smiley!
(Insert 2 laughing faces, winky, and blowing kiss face)
Yep, I would have nailed those emoticons (thumbs up symbol to myself).
It has been Twenty years since RSD crashed into my life and it has been quite the ride. Some moments I have wanted to be over before they happen. Other moments I held onto for dear life because they were all that sustained me through the hours and days of pure physical and psychological torture. At times I was able to be more normal like many of my peers. Other times I behaved and felt as if I were on my death bed. However, if I had the choice to do this all over again there would be nothing that I would ever change. I am not saying I like being sick but all of the gifts that it has helped me to find out about myself in a hurry compared to my “normal” peers has been truly priceless. I will tell a brief side of my tale that has led me to find peace with RSD and my life.
In February, 1996 I was a normal 15 year old girl who really did not want to go to the dentist, and I got out of it by going to the ER instead. I knelt down and felt like I broke my kneecap in half (I did not). So my mother and brother took me to the local ER to have my knee looked at (I had to be carried, it hurt so bad). They took and X-ray of it and found out that I had somehow knelt on a needle that was now lodged in my lower thigh muscle. They ended up sending me to a different doctor to have surgery on my knee as they could not get it out. The surgery doctor’s next appointment would not be for five days which they thought would give the needle time to work its way up out of the thigh muscle. It worked its way further into the muscle instead, so on that day of the surgery, they took four times as long as they thought they had planned for. After the surgery, the site that they opened up to remove the needle was healing just fine, no complications, no unusual pain, but then on the eighth day after surgery at 4:30, sometime in the afternoon, RSD came into my life. So far has not left, although I keep insisting that she can be on her way now.
So, mid teen years were now controlled by not me, my school, or my mom, but by RSD, and I am just learning how to gain control over the elusive mistress. She swept into my life limiting my ability to go to normal school and participate in normal activities, although looking back at it, she might have saved me from getting too wild and crazy. I hated my ninth grade year before RSD came in the picture but it became even more troubled after. I ended up dropping out of ninth grade because I could not get out of bed due to the intense pain my leg.
I enrolled into a different high school as we had moved during the summer into a new school district. Tenth grade year was magical with the friends that I made and the activities I enrolled in at school. School was great, home was rough, but was do-able. The pain never went away from my knee and I learned how to distance myself from the pain and focus on my life, but there were times that the pain would break past my threshold and I was no longer able to hide it from people.
Eleventh grade I enrolled in dance class at my school and thought that if I was going to “try” to learn to dance I might as well try once more to figure out why my knee still hurt after 18 months of the initial RSD onset. I ended up seeing a doctor whose specialty was RSD though we did not know that at the time. After the initial meeting, within four hours of meeting this doctor, I was officially diagnosed with RSD in my left knee. I thought, okay this can go away with one of these treatments that the doctor wanted us to start trying right away; it was one tough year. So, treatments start, the school year starts, and everything is going ok. I do not know what to tell my friends so I do not tell them a whole lot. They just find me funny that I would become a log when we would have sleepovers; they would use me as a table to put the pizza on.
I started missing more school days but I managed to keep up until the end of that year. I was desperate to have a job, so even though I was not that functional, I got a job for 9 months. It was fun getting the paycheck, but work was fast food, not rocket science. In twelfth grade I ended up having a teacher from my school come to my home to give me school work and tests so that I could graduate with my class, which I barely managed to do.
I had a boyfriend I loved very much but as time went by we were not a compatible match for each other, and RSD became more of a main focus in my life which I am not so sure that was a good thing.
College time came and I just knew I had to go to college for all those wonderful fun 80’s movies that glamorized colleges, and besides, how was I going to work being sick all the time? I took one class a semester for 8 years after high school. I loved my college years and I made some off-color choices, but hey, I thought isn’t it in college that I can get away with shit? My grades were up and down because of the pain but it gave me the experience of a lifetime- taking my time to learn what I wanted to and figuring out what thrilled me to fight for more than just surviving this illness.
I did, by my hairy son Randy (dog) and my hairy son Orion (cat), my hairy son Siries (cat), and through my hairy sister (dog) who in one form or another was sick. So, I started researching about pet health and focused on pet nutrition as it was something that I could do to affect their health. The love for business, invention, and innovation became my zest for life and I helped me to handle the illness.
It took years to get here- where I can see the future I want for myself, and know that I can have it. I would have what we call the “Lorado” me acting like a tornado being destructive against myself, my possessions and the people I loved. I was unable to control my emotions, and I would get really upset over anything, but really, I was just upset because I was miserable and extremely unhappy.
I read books by people who help people handle their moments in life. I started asking myself what I really wanted in life with or without RSD. I took time to learn to know what I wanted and learned how to stop hating myself and RSD. I would pick a part of myself to like about me and over time I learned to love me and those around me more profoundly and deeply. RSD was no longer my calling card or any way to describe myself. I became Logan, just Logan.
I am becoming a successful business woman by helping to start up a company with my mom and brother, www.Blindsofbeauty.com the one and only company that sells and makes vertical blind slip covers. This is just one of the many companies I will be involved with creating and running. Believe it or not, it is because of RSD that Blinds of Beauty exists, my mom invented vertical blind slip covers as a way to cover the vertical slats that would leave my room even when they were closed blazing hot while I was going through blocks and treatment for the RSD and we were prohibited on our apartment lease from putting holes in the walls. It took a few years (15 years) to start the vertical blind slipcover company but it has been well worth the wait. Blinds of Beauty is giving me the job as the CFO among other responsibilities. Life is pretty great for me now; I just had to find me.
It has been a work in progress to live my life with RSD, ignoring it to the best of my abilities (not always wise), loving the hairy children I have, giving life my whole heart, following my dreams, and having fun. I plan to run companies, adopt a few non-hairy children, have a wonderful partner, live my life on my own terms, enjoy the great moments and breathe through the rough moments.
This week is the launch of Logan’s new website for her company, Blinds of Beauty. Please check it out. It is truly unique! I’m so honored to share Logan’s story here. She is one of the first people with RSD I “met” online over a decade ago, and we have been friends ever since. She is a beautiful person, inside and out, and she deserves every good thing this life has to offer!
Portrait by Hypnotic Teapot, Etsy
~The Liar Inside~
There is this voice. It whispers. (It screams.)
It tells you that you have fallen too far.
There is no returning from these hits.
It tells you that someone else would have handled this path better.
Braver. Tougher. Smarter.
Someone else would not have lost so much. Someone else would not have allowed themselves to fall…this far.
She tells you that you are a burden. A vampire.
Selfish. Helpless. Unworthy.
She tells you that if you disappeared…no one would grieve for you.
She has a voice and she has eyes. She shows you how others might see you: Pathetic. Weak. Alone.
She lives in the home of everyone.
She sneaks in through the window of your mother and father.
She sings you hateful songs about others. She sings you hurtful songs about yourself.
Satan is an angel. Nickname: “the great deceiver.”
Silence her deception with love, service, worship, gratitude.
Silence her deception with truth:
You are loved.
You are strong.
You are worthy.
You are made in the image of God.
You are SO unbelievably beautiful!
You can face this day fiercely and boldly!
And you are not alone.
~a Body of Hope
Custom image by Portrait Artist, Hypnotic Teapot on Etsy. She creates stunning, unique color and pencil portraits of you, your friends, and your pets at an affordable price. I have ordered custom artwork from her and can vouch for her professionalism and amazing artistry. Go buy a gift your loved one will never forget! #ValentinesDay
My sister asked me what I wanted to do for my birthday last year. I told her that if I had been well enough, I would’ve wanted to invite friends over to make sandwiches to bring to hungry area children. I used to do this type of thing in high school sometimes, and last year fantasized that it might make for a unique summer birthday gathering that my friends would like to participate in (being my awesome friends). I was really only thinking out loud, and then asked her what she wanted to do for her birthday (since our birthdays fall inside the same week).
When my birthday came around, I went to stay at my parent’s for the week. On the day of my birthday, my family gave me a small photo album filled with pictures of smiling children. “How cute…What is this?” I asked, curious what my family was up to. My parents and sister had arranged to spend the day volunteering for a back to school program called Give a Kid a Chance which prepares underprivileged children for the coming school year. My family donated goods, packed backpacks and checked little heads for lice. They spent their entire Saturday volunteering for this wonderful program in honor of my birthday!!!! I was crying, they were crying, we were all emotional as they shared the details of the day. It is absolutely one of the most heartfelt and most humbling gifts I had ever received, (which others received) and I know I will never forget their beautiful selfless gesture.
When my mom explained why they did it, she said, “Volunteer work has always been such a big part of who you are. After you couldn’t help in the community any more, you turned your attention to caring for people online. Your sister told us what you would have wanted to do for your birthday, so we did this because you would have been doing this if you could have.”
I didn’t realize how much I needed a wake up call until that moment. I felt like a doorbell was being rung to the door of my soul that a warrior part of me had to close in order to stay alive. To fight the illness, I had to know my enemy, and get in the trenches with him. But the price was that a piece of me had to be shrouded away, protected in that way, while I fought through the very worst of it. My family didn’t know how much I desperately NEEDED this reminder of my core, of who I am.
No one had spoken of my former self out loud in what felt like years. Their gracious act and words were like an unlocking spell. Something awakened inside of me on that birthday that started a transformation- which is still in progress. I am so thankful and fortunate for them, for having the ability to see the good in who I am now, and for never forgetting the person I have always been.
I woke up the following morning with this poem trickling from my brain:
In the time and space between
dark rooms and restless painful nights,
you might have time to count
too many stains on the paint.
The time between forgotton breaths
may have left you wondering
who you used to be.
Did the air sneak your old life out?
Under the door?
Through the cracks in the floor?
Like Russian dolls,
the top one falls:
And mama sweeps it away.
Those who recall that ghost,
tip toe beside the host of the demon.
They bring pieces of the past,
until at last you remember.
The apparition waits outside.
Now, you can smell her perfume.
There are times during the fight that we must lay down our old lives and find a way to nurture today, without looking back or too far ahead. But I’ve also learned that reminders of your past can boost your spirit in the midst of a struggle. Wherever you are in your journey, I hope you have someone in your life who sees the strength in you and reminds you of it.
Blooming Beauty is by one of my favorite artists: Peggy Wolf. Check out her gallery on Etsy, you’ll love her as much as I do.
My good friend at one of my favorite blogs, Findingoutfibro wrote this amazing post below!
Finding the good in your struggle and using it positively is definitely something to be celebrated; however, when others forget the good you choose to share is born from the daily struggle you STILL live in…that is where the problem lies. Please continue reading:
The danger of being viewed through the lense of the “inspiring cripple” archetype is that it was created by ableists as a tool used to invalidate those who are struggling. It means that people expect things from you that you weren’t even capable of before disability, muchless after. It’s such an unhealthy way of approaching people who are ill, as if we are not trying hard enough unless we can plaster a fake smile on our face and say we’re doing well, when actually we are struggling in ways that only a small percentage of the population can understand. The notion of the inspiring cripple does not leave room for the uncensored reality of the chronic illness spectrum.
If you are able-bodied and do not experience mental illness, I am not your inspiration. If something I say or write is helpful to another spoonie, then that is why I am here and it makes me happy…
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Cooking with Chronic Illness'
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