Are you in a heat wave? It seems the entire country is encountering record high’s this week. Our AC has been pushing so hard that it SHUT DOWN! It got ugly in here, but thankfully, it wasn’t out for long.
Just the short spell of overheating, and flaring in turn gave me a better appreciation for what people have to bear all over the world. Things which are so commonplace to us in this part of the world, are luxuries to others who don’t have the same privileges.
Not that we should compare ourselves to anyone else, but it can be valuable to approach your life from a different lens now and then.
So, I share my own perspectives with you in the hope it encourages you in your life as so many of you have encouraged me.
It breaks my heart to think about how people go on living in the same unimaginable pain, and try to accept these very same conditions without the hope of treatment so many of us have here. But, I imagine their lives aren’t built around doctors, medications, and treatments, but instead, seeking to find more meaning behind the curtain of life.
Grief is an important part of processing major life changes. There’s nothing wrong with sadness and sorrow. Self loathing and hating my life, however would be.
I suppose that’s why the mission of seeking out hope is so meaningful to me. I know we don’t always have the strength to find hope for ourselves; our lives at times appear devoid of all light. That’s why I wanted this to be a place anyone could reach out and find it when needed.
Around the world, people like myself are viewed as cursed, and are disowned by society. Many believe their conditions were brought on by sins from their past lives, or they believe they are being punished for wrongs done by their ancestors. In many parts of the world, society sees disability as contagious- even demonic. It’s not uncommon for disabled children to live on the street, or to be “put away” in facilities for life. We have a shameful history of treating our disabled brethren in a less than dignified manner here in the states as well.
I think of my own faith and how it has shaped my experience through this journey. Jesus was never afraid of being seen around sickness, disability, poverty, or with the people who had been most marginalized. He put a spotlight on the parts of society which had been ignored. He didn’t run away, He ran toward people who were suffering.
I’m not the young woman I was 13 years ago- I’ve been changed by this journey.
There’s always a new version of us that emerges from the flames of adversity; we have to get to know ourselves again and what each new chapter of life will bring next.
I know having multiple rare diseases isn’t a life anyone anywhere would wish for.
And so is yours.
Below is more information about our disabled brothers and sisters around the globe.
-Today in the United States, chronic pain patients are often denied treatment, especially if their condition responds best to opioid pain medication.
-In Japan, women were forced to terminate their pregnancies if the baby was found to have an abnormality. (This law was abolished as recently as 1995.)
-In China, disabled individuals are depicted on tv like side shows which doesn’t translate easily for disabled individuals living in society.
- 70 million people need a wheelchair, but only 10% have access to one
- 360 million people have significant hearing loss, but less than 10% of people who need hearing aids have access to them.
- 93 million children worldwide have moderate or severe disability
Mental Illnesses are on the rise worldwide.
- Depression: 300 million people
- Bipolar affective disorder: 60 million
- Schizophrenia & other psychotic disorders: 21 million
Chronic Illness has become a worldwide epidemic.
- 300 million people live with Rare Diseases (1/2 are children).
- Chronic Pain effects 1.5 Billion people around the world.
- It’s estimated that 60% of the world’s population has at least one chronic illness (highest percentages in developing countries).
We should all have a calling, right? A passion that drives us. “If you find your purpose, you will never work a day in your life”, and will be wonderfully successful, respected, admired, and make loads of money. At least, that’s what I’ve always heard, so it must be true.
What if I told you that having a “Life’s Purpose” is a myth.
We are taught by society, and modern culture that to be fulfilled, we have to find our one special calling, that career we love, and it will bring us prosperity and fortune all of our days.
Why is this philosophy problematic?
…Because we aren’t built to have only one purpose. We are each meant to fulfill many unique and diverse missions throughout our lives. We have dreams and goals for ourselves, but we are multidimensional beings and our greatest life passions and fulfillments may or may not be wrapped up in that job we desire.
Most of the time when we say, “What is God’s will for my life?” We are referring to our careers, right? But God allows purpose to thrive in so many aspects of our lives.
You can be a passionate artist, a wife, mother, doctor, friend, AND a passionate writer. You can find calling, drive, and fulfillment in multiple areas of your life.
The world hands us such an impossible task of figuring out our one and only sparkling, unicorn reason for existing, and it puts sooooo much pressure on all of us. Once we believe we’ve found our “life’s calling”, complete our degrees or training, we can finally pour our passion into the work… but some time later, there’s an itch that comes over us. We feel unsettled, maybe even claustrophobic. If you’ve felt this way before, it’s miserable. And it’s also a huge disappointment that the dream we wished for doesn’t feel like we hoped it would. You do everything you can to refresh that passion you once had in your work, however, more than likely, the feeling of displacement whittles away at your spirit.
A Life’s Purpose is not the same as a Life of Purpose.
We were not built to stay in one place. God has so many plans for each of us. Some of us are amazing multi-taskers, juggling projects and people all at once, and others of us pour everything we have into one job, person, or other undertaking, and then we are diverted to our next chapters. One season ends, and the next begins. Sometimes there are painful seasons in between for our growth, for pruning, and for us to prepare for whatever we are meant to do next. And for some of us, those painful seasons last, so we seek out purpose and meaning in the big and small moments.
Callings come in seasons. We all hear the stories again and again: Someone had a career they loved, then a crisis struck, but that sideroad somehow illuminated a new and exciting path. It happens all the time.
Like me, you might be asking, “What is God’s will for my life now?” You might feel a little bit lost in the fog, the upside-down, so to speak. Very rarely, we have these beautiful gifts of some extended time when we are just waiting to find out- what’s next? It can seem like forever, but rest assured, you are never forgotten by your Creator.
I’m not very good at being still and peaceful while I wait, because I am so impatient. It is such a comfort to know, we are always fulfilling our Life’s Purpose when our desire is to please God. When you’re seeking to do the next right thing, you can be at ease that you are living inside of your destiny.
Today was the second annual Disability Pride parade in NYC!
Here in this video you’ll see disabled individuals dancing together to commence the opening of the parade. This dance speaks to the nature of disability- the diverse disabilities we can see with our eyes, and those which are invisible.
As you watch the video, and think about some of the reasons for a parade like this…
Many who have declining health feel ashamed of their bodies, and in time, may also feel ashamed of themselves. Friends stop reaching out as health issues just sound like “drama” to most people who have never faced a health crisis. So many have been forced to leave behind a career, or dreams they once held dear. Although it sounds harsh, it’s not uncommon at all for family members to tease or bully as individuals change physically and/or mentally, leaving them extremely self conscious. People can be very judgmental of body shapes, walking aids, and challenges that are unfamiliar. Others are quick to call out what they see as “inconsistencies.” Even strangers in public call those in wheel chairs “liars” at times when they don’t understand that paralysis isn’t the only reason one might need the aid of wheels, or that a handicapped parking spot might be needed by someone who can walk normally.
It’s no wonder that people start to lose their self worth, and isolate themselves as a disability changes them.
You know what? FORGET EVERYONE!
So, this isn’t a news flash, but people don’t get it, and they don’t get you. You, my dear, have so much to be proud of, and SO MUCH to share with the world!
You are an over-comer, a warrior, a never-giving-up, wheel rolling, cane sporting, walker toting, re-inventing, hope finding, doing it anyway, sometimes invisible illness (but never invisible)- always working to conquer your challenges: BRAVE fighter! Heck yes you should be proud!!!
You don’t have to prove how much pain you’re in every day, how badly cancer changed your body, you don’t have to show your prosthetic, or tell anyone what your mental illness is… unless you want to. You are living proof of pure strength. You don’t have to work to be an inspiration to anyone, but hey- you already are, kiddo. You’re pretty spectacular just the way you are, in the body you have right now.
Please don’t keep your amazing self on lock down. You’re the only you this world will ever have! Heart (((hugs))) going out.
What do you think of the Disability Pride Parade? How are you #DisabilityProud in your own life?
To be thankful while you are suffering is one thing, but to be thankful for suffering….
Once in a while in the support group I administrate, there is someone who makes a statement that is so powerful, it catches me off guard and it sets my soul on fire. In truth, this isn’t a rare occurrence. I guess you could say that those suffering so deeply every single moment of the day have some profound insights to share. One thing that inspires me the most is when people say they are thankful for their illness. That is a bold statement that I believe one would never come to lightly- and no one would EVER openly say something so provocative in a support group setting among a band of individuals with severe chronic diseases, unless they truly meant it. That’s why it always gives me pause whenever I hear such powerful expressions.
It’s not unusual for those who go through a near death experience or a serious short term illness to find deeper meaning and purpose. It’s no less real, but it is more common when the storms have an end, and suffering can be left behind. While it’s not rare for those with ongoing illness to eventually find new ways to appreciate life again, to say they are grateful for their illness, it is so much more rare in cases of chronic disease. Why? Because an illness that is daily, constant, and does not see an end- is far easier to hate than to get excited about. A condition which may be degenerative, becoming more painful and physically or mentally compromising over time, isn’t easily beloved…as you can imagine. To me, it’s almost a miracle hearing that anyone would be happy or thankful that they became so sick. Others with chronic illness can find statements like these offensive, even. These ideas of “illness gratitude” certainly border on the extreme, but make one wonder where their personal journeys have lead them to truly embrace their infirmities.
I’ve heard people claim to be thankful they are in pain and chronically ill because it transformed their lives. It made them see the world in a different light. Their conditions allowed them to shake off the clutter and stress of a life that they realized didn’t have substance, and focus on a life of greater meaning and value. They once believed losing their career meant losing their purpose, but I’ve spoken to those who say that they are so thankful they became ill because now they found their true calling. Some have said that their new life of chronic illness has enabled them to be there for people in ways they never could have in their “healthy” life, so they are forever thankful for their new sick bodies, and how useful they can be to others through deeper compassion and connection. Sometimes people are grateful they are in pain because it has brought them closer to their faith, and they cherish a higher spiritual connection they never could have had without constantly being pushed to the edge of what they can endure. They are forced to cling to God instead of their own strength, and in that comfort, they find gratitude for suffering that brought them more enrichment spiritually.
Again, these are extreme statements, but thought provoking and inspiring nonetheless!
Most often, people I encounter long for a cure or pray to be healed. That’s normal, and that’s not at all unhealthy. Research in psychology equates the loss of health or a limb to losing a family member or spouse passing away. It’s earth-shattering. The losses just keep coming. With chronic illness, the grief starts over again and again. It’s cavernous, and there’s no end to the emotional roller coaster or the physical fight. Hoping for a cure, for healing, or for remission is what we all are desperate for, and that focus can at times become crucial for survival. But for some of us, restoration of health becomes a worship in itself, and begins to supersede everything else. Seeking a cure or healing can become such a focus that illness becomes nothing but a betrayal of God, of government, of doctors, and family. Nothing feels real except wellness and full restoration.
Obviously these are 2 opposite sides of the spectrum, and balance is always the goal.
When I was diagnosed at 22, I spent the first years asking God WHY? Staying up every night in excruciating pain, my leg felt as though it was breaking, nerves like being electrocuted and burning pain like nothing I could have ever imagined before. Full body spasms, tremors, the room spinning, my heart racing and palpitating, wondering how I had planned and worked so hard for everything that had lead me here, just to lose it to this “incurable degenerative” condition that no one seemed to be taking very seriously to help me try recover from. It didn’t make any sense. As much as I tried to analyze it, I couldn’t crack the code. It only made sense for me to get better, so I searched for my panacea, and prayed (demanding) that God must heal me. At the time, I wasn’t a big prayer person, but illness has a way of connecting you to your higher power. In the Bible, yes, there is healing, but there is also so much pain. The importance of learning through pain, finding ways to share strength or comfort inside of infirmities, these are scriptures that have been so encouraging to me.
I eventually felt lead to make a decision. I believed God would heal me, and I still do believe that is true. But, I decided that if I was going to spend any period of time living a “sick life” I was going to explore it. As much as I was desperate to go back in time, moving forward is all I could do, it’s all any of us can do- Even if it’s slowly, frightened, and with tears in our eyes.
I cannot go as far as saying that I am thankful I am chronically ill. I can say that at almost 12 years, I’m so grateful I made that decision to press forward and try to find myself inside of this life. If I had stayed so distracted by my past, or so focused on what I might be losing in the future, I would have missed every bit of the beauty, the miracles, the blessings, the generosity of others, the opportunities to be of use, and purpose found inside of this pain.
More than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us. Romans 5:3-5
I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong. 2 Corinthians 12:10
For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us. Romans 8:18
When the cares of my heart are many, your consolations cheer my soul. Psalm 94:19
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.
20 Year Anniversary by guest writer, Logan Woods
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.
The doctors I went to told me was in my head even though my mom kept telling the doctors my leg kept changing colors to this purple splotchy looking thing. My mom believed me but by then it was such a trouble to handle getting told over and over again there is nothing wrong with your leg. So, I gave up going to the doctors and started living with the pain.
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.
The pain and treatments that were supposed to help just left me isolated from the world, partly by my choosing and partly because I could not act normal with the raging fire in me all the time, so I turned inward.
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 was figuring out that I had found a passion to learn how to thrive. I was only identifying myself at that time as the girl with RSD, nothing more. It took me years to figure out how to stop identifying myself as that sick RSD woman.
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 was tired of being sick all the time (not like we ever get the choice), I was tired of feeling like the only life I might have is through other people, and tired of myself. So, I had to make a decision if I was going to “stay” I had to change me or more precisely change my thinking.
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.
Today, at twenty years, two months, and twenty days into RSD it helps make me, me.
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!
One year ago today, my husband decided he wanted to separate. For months after, I fought for my marriage alone, for the man I loved, and then…after months of silence, I realized I was standing alone with an untied knot in my hands. Everything was torn away from my life. I had to decide whether I would keep going on, or if the pain and loss was too much to bear. I made a decision to continue fighting, but this time, for myself.
I wrote another post today in which I outlined May 1st of last year, and how the days and months unfolded with everyone’s shock and grief and the unexpected surprises to come which I could never have foreseen. But, I think I’ll save that piece for my journal as today I don’t want to look back thinking only of my ex-husband, and the loss of love. I’ve grieved him, our marriage, and our life together throughout the year. Today, I want to look back over the year and remind myself that I overcame everything I believed was utterly impossible to do alone. I want today to be another choice for myself. Next year, I want to celebrate this day as the beginning of letting go and starting fresh. Typing those words brings a few tears to my eyes, but I want them to be cleansing tears. I don’t know how to be just me without longing and loving and planning for 2 yet, but I will learn, and I have great expectations.
The first thing I did when I came to stay with my parents was I made a doctor’s appointment. It’s the most difficult thing I have to do physically; only my ex had ever taken me before- and my doctors helped us avoid making the tremendously painful and exhausting trip by scheduling me months apart. After such an emotional shock, why did I want to go through a physically traumatic experience with an inexperienced caregiver? I guess I just had to prove to myself that I could do something impossible without him! I went out of my way to do as many impossible things as I could find while I was so emotionally fragile. I’ve been to several doctor’s appointments, I’ve had new tests, and I had been afraid of going back to the hospital, but I’ve since been twice this year. My body fighting me on the outside as I pushed it harder and harder seemed to match the feeling of my heart dying on the inside.
My ex-husband was my caregiver for the last 4 years of our relationship. He knew what no one else could: about my condition, about my needs, about my doctors, about my life, about my heart, and he knew everything about my soul… I thought he did. When someone has spent years exploring the very depth of your soul, and can go to such lengths to reject you, no pain matches it.
The loss has been cavernous. I first believed I wouldn’t be able to continue on living without him- practically or theoretically. Not because he supported me physically, but because he was my heart. After mustering the strength to ask my mother and father to help me do several impossible things, I went in search of both a professional caregiver and marriage counselor. That took me a great deal of courage to even allow a stranger to enter this room. I thought, how will I carry on a conversation? What if they can’t be quiet enough for my pain level? What if they don’t know how to touch me and injure me, spreading my condition? But I had to do these impossible things, as well. I had to allow a stranger bathe me, and help me dress, and prepare my meals. It was a point of my very survival to find someone else to help me with my basic needs. It could have been degrading and humiliating, but I was so stubborn in what I needed to allow for myself to live in my new normal, that the physical need mattered far more than my personal dignity.
Soon after, I began inviting visitors for the first time after coming to my parent’s home. It was terrifying at first. I can’t imagine what that’s like for them to remember me one way, dancing, hiking, laughing, and now, laying in a bed, startled by every sound and speck of light, grimacing in pain. Letting those I adore into my bubble felt impossible at first, but it’s another kind of exposure therapy that’s a lot more fun ! Seeing old friends is like a mirror through their eyes, and it can be tough emotionally, but it’s also exciting, and makes me feel more like the laughing, hiking, dancing me that they remind me I am still. My own mirror sees myself through the eyes of my ex now. Where there were once loving, gentle eyes, I see a look of disappointment and disgust. His eyes have always superseded others for as long as I can remember, but he’s not mine anymore, and I’m not his. I’m God’s, and in His eyes, I’m worthy, I’m valuable, and I’m fulfilling my life’s purpose by living it.
My closest and oldest friend went through her own very difficult divorce in the year before I went through mine. They say, “God goes before us” and when I think of my sweet friend who has been walking her own hard path, checking in with me, and visiting often, I promise you that is true about the love of God lighting candles ahead of us. I’m grateful to be able to practice showing love to her at a time that I feel so empty of everything inside of me I used to be eager to give away. She has reminded me to keep pushing forward so many days that I felt alone. Having a friend who continues to tell you that you’re still the same person, you’re improving, and was willing to fight for me when I couldn’t fight for myself is more of an angel than just a friend.
The short quiet visits I was only tolerating have turned into longer, more enjoyable visits I so look forward to. I started with home physical therapy, which has been an immense help in my progression, and I BELIEVE I’m going to be a functioning human being again- no matter how long it takes. While I do get frustrated with my body, I’m not worried about the time table, only that I make the goal. My parents allowing these people, and often strangers in and out of their home for me has been life-changing. I hate when people say that I’m better off without him, because now I’m able to utilize so many resources to improve, but I understand what they mean. I’m just thankful they are seeing improvement that I still need help seeing for myself.
Every time I’ve wondered how I would pay a bill, how I could live without something I thought I needed, how I could go on without the people and pets I loved, God has always provided a solution, an answer, or a strength to live without. This consistency has lead me to rely on God coming through and has added to the peace in my spirit and courage to face the impossible with the safety net of the universe.
Even though I’m not grateful I was forced into it, I’m grateful I was able to manage my own proceedings via electronic communication and courier to/from the lawyer. I had no idea how it would work with my condition, and just the thought of it regularly caused me anxiety. But again, God had the right lawyer in mind for me, who worked as my advocate, familiar with disability, even meeting at my home. I had a Power of Attorney to appear for me twice as my signatory, and my lawyer spoke on my behalf in my absence or with statements from me. Being disabled, you feel marginalized so often as it is. It’s as though you’re disappearing. Because of my condition, my movement, voice, independence, and freedom have been taken from me. I think that’s why it was so very important to me that I didn’t give away my privilege to speak for myself. The decisions, paperwork, and meetings were all so overwhelming, I was cognitively pushed to thinking in critical, complex ways I had not since the brain issues began. As much as the divorce may have damaged parts of my life, the process was a healing experience for my physical progress, and has propelled me forward in many positive aspects. I thought I would break apart as my heart broke more and more, but I’m proud of myself for getting through it, and managing my personal business.
Learning to be proud of myself is new. No one else is going to do that for me. I’m learning to encourage myself. No one else is going to remind me to take it easy and be gentle with myself. Giving to myself is a new concept, but I’m learning to view it as responsible and not selfish. I feel emptied of everything I was, and all I can do while I heal is continue on, pretending I’m a human being. The life I worked for and dreamed of is gone now. The slate is clean and I’m beginning to feel empowered and free to build back a completely different life. Some moments my heart aches, but at other times I’m revitalized thinking of the future of possibilities.
I started working at 15, graduated at 17, and left my parent’s home to travel the day after HS graduation… Now I’m back. I’m being cared for by my parents, learning to nurture myself, learning to walk again, my parents are making me food each day…it’s quite an irony! For me, this anniversary is truly a rebirth.
I’m a pretty tough customer in physical therapy. But, the other day my physical therapist said something very poignant that gave me pause. I’d like to share it with you.
He said, because I’ve had chronic illness for so long, I’ve adopted so many coping strategies to help me through. So many techniques and methods I call my own to get me from one day to the next. (And here he is teaching this old dog new tricks.) However, he was right when he asked me, “Is all of this still working for you?”
You start collecting techniques from the very first moment you hear the word, “permanent” or “chronic.” Our doctors don’t help as quickly as our own shifts and wriggles take effect. Soon enough, you’ve built a pattern for yourself that is keeping you going. Over so many years, and multiple conditions, you better believe I have some modalities and some definite patterns! Are they still working for me?
Could they be holding me back?
Adaptation is paramount with chronic illness. You have to be able to rebuild in order to find purpose again, to find yourself again amid your ever-changing body. But as your body changes, does the structure that you built change with it?
For instance, if all you were once able to do is use the computer or your smart phone, maybe you grew a strong online network which gave you purpose. You could have done nothing instead, but you were brave and reached out to others online. It was incredible how much your work online distracted from your illness and impacted your life and the lives of others! It may have even saved your life. But as your body changes, you realize you can do more tactile work like crafting. Is spending as much time on the computer still working for you? Or, could it even be holding you back from moving more?
I have to go over so many of the coping tools I use- all of the amazing methods which have helped me to this point and ask this question. It’s spring after all; time for a spring cleaning of sorts. Is it STILL working? It may have saved my life last year, but will it take me to my next goal this year?
There are many things you can forgive your body for, but there are moments, relationships, days in life you miss which you will never get back, unforgettable, unforgivable events you are denied in the face of disability. My body is broken, and she continues to break my heart.
This is how those of us with chronic diseases struggle so deeply to have “self love.” Trapped inside bodies that attack us, and hearts which shoulder the guilt of our loved one’s pain from the hurt our illnesses have caused- child, love thyself. Love your abuser. Forgive the one which harms those you love the most. Forgive, forgive, forgive….
Body, you have taken my choices from me all of my adult life. Body, you are the abusive relationship I have never been able to flee. Body, you have stolen my health, my career, fun, freedom… my dreams. No permission was granted to you, yet you take all you touch. You are a jealous, volatile disease, and you only care about your own needs. I have suffered abuse and trauma at the hands of doctors on your account, though, you still batter me without compassion. I’ve been abandoned and made to feel worthless, INVISIBLE because of you body; I’ve had enough of your games!
Body, I break up with you. Sorry, not sorry.
I tear you from my soul and leave you. I will still care for you, because I am obligated. I am bound to you in ways I cannot choose, but I will no longer adore you. I will not call you my own. We are committed to one another, but I turn my back to you, body. From here on out, you will be “Body” and I will go forward being Me.
This is my self love. This is my self compassion. This is my choice.
I rage against your victimization. Your assault on my essence is over. I choose to make my life despite you, in spite of you!
I choose, I choose, I choose.
My flesh and bone surrenders, but my spirit rises up! Your reign, your emotional and psychological torture is over. Call it dissociation, call it compartmentalizing, call it what you will- it IS a detachment, and it is necessary.
I sign the papers and I box up your things. You can live in the basement and I will now and forevermore preside upstairs, in charge of THIS HOUSE.
Sign here X _________________
Please support Rare Disease Day on February 29th. www.rarediseaseday.us
So it has been 9 months since my husband and I parted ways. For us it was not a gradual thing. Well, maybe for him it was….
[I’m going to get through this without talking about his personal details.]
On my end, I knew he had been struggling all year, and I was trying to be uplifting. One day, I was texting him love messages, silly photos (which are now just embarrassing), funny videos, and anything to try to help him smile at work. The very next day, I was living at my parents’, confused, and unsure what happened the day before, or why.
I don’t remember much about that conversation after he got home. I do remember messaging a friend in a daze asking what I should take with me, and Google searching
: “what do you take in case of a fire.”
In some ways, 9 months has flown by, and in other ways, it has dragged on much too slowly. It has felt impossible at times for my heart to catch up to all that has occurred, the choices that were no longer mine to make, the quickly unraveling dreams that were out of my control. I was often reminded that I had experience with surrendering, and making peace with pain, and could do it again if forced to. (I think people with disabilities are resilient in that way, and though it feels like every day is a fight, we learn adaptability which is a gift!) On the other hand, I felt continually impatient. If you have ever waited for test results that would almost surely come back with an outcome you don’t want to hear, something within you cannot help but crave the knowledge of it, no matter how bad. Almost like the tree of good and evil. Waiting was like an itch I couldn’t scratch. A part of me wanted to know my future in certain terms, and with immediacy. The rest of me was at peace to wait a lifetime in limbo, however impractical that would be.
That afternoon was our last conversation as husband and wife; I didn’t know it was goodbye at the time. You may remember, I wrote A Season of Waiting just after. Now you know the inspiration behind the message.
And while so many months can seem like a very long time, with a new life emerging beneath me, there are still huge landmines that explode in my face when I least expect it. Several exploded from the mail box right after breakfast this morning. It was a hard day, but not the first, not the last, and I’ve certainly not seen the last good day either. The “process” ended just last month, but THIS process is only beginning.
I’m trying to grow accustomed to managing life on my own. …Without having someone to share these pitfalls and triumphs with. Loss and heartbreak is certainly not new to humans; and I will adjust to it better and better. I confide in God, and it is incredibly humbling to share my worries with the creator of the universe.
I’m thankful to be ending my day with you, eating bacon and drinking chocolate coconut milk. (I get to eat that kind of thing, because I have POTS… at least that’s my story.) That IS my story… at least part of it.
Have a good night. And avoid those landmines.
New page, Disabled and Divorced
PS, Check out the counter for my sister’s wedding at the bottom of the page. Getting close!