Sometimes I feel as though I’ve slipped into an alternate dimension. Like there’s another version of me living simultaneously while I live my own life. She’s the same age. Her appearance is relatively the same. But somewhere along my lifeline, she and I took different paths. I am living out this fate, and she is living out another.
I’ve always tried to steer clear of asking what if. It never seems to serve any purpose other than cause unneeded longing and regret. But, after the last few years, and all of the sudden changes, my mind is sputtering to catch up. I’m left with the feeling of… displacement. This what if exercise is definitely risk to me emotionally. If played out fully, I hope it will help me sweep the shattered bits back over into my dustpan.
This past year, I can’t help but feel as though I’m in the wrong life. I can’t shake it.
I imagine what another version of life might be now. I dive into the best and worst of my soul twin, and play out her footsteps.
I sort through the details of her life. There is hurt, longing, and regret of unfulfilled dreams that come along with playing out these fantasies. I’m afraid of going through the looking glass. How deeply will this cut me? But in the end, I hope the exercise will help in some way.
It’s like the movie Sliding Doors; I imagine myself making one different choice and living out my life in a parallel universe.
In one reality, I’m still married. I never fell down those stairs in 2004, we had 2 amazing children, and I have the career in psychology I once hoped for. In this reality, I’m just as outgoing, adventurous and fun-loving as I was at 20. This version of me loves her work, she loves helping people in new and experimental ways, and if she ever finds time, she hopes to write a book about her work some day. I imagine her life busily driving her children to baseball and soccer, standing back stage smiling at ballet recitals, and taking pictures at music festivals with her beautiful family. She loves her children and husband unconditionally, they have a house filled with laughter, and they show her love and affection in return. Every couple months she sells handmade jewelry at an art fair- this is when she feels most like herself. Even though she counsels others effectively, she never had time to resolve the issues from her own childhood, and it shows now in her behavior with her/my parents. She empathizes well with her patients, but she doesn’t understand their suffering, and is frustrated when she can’t fix their problems. Her family stopped going to church and volunteering together- she deeply regrets that for her kids.
Maybe I chose differently after high school graduation, and followed my dream of aid and mission work. Another Mary has been living in a far-off village building wells and working with abused young women for several years. She has collected a different language for every country she has lived in, and always looks forward to her next project. She never married, and rarely regrets the decision to stay single and forgo becoming a mother. She is strong and healthy, but tired, and isn’t quite sure where home is anymore. She wishes she could fly back to the states each time a friend or family member asks her to come to their wedding, birthday…or hospital bedside. She lives a life most can’t understand, but she wouldn’t trade her life of service for anyone else’s.
There’s yet another version of me who never moved away from New York City. She stayed on the path to pursue an art career. This version of me has short, messy bleach blonde hair, and wears an old motorcycle jacket she stole from an ex boyfriend. She works at her friend’s bakery so she can pay her bills. This Mary struggles with depression, but the angst feeds her art so she doesn’t get help. The mental illness ruins her romantic relationships, so she’s lonely in a big city. She has a modest art following online, and has a large network of colorful friends who keep her very busy. She sings in an indie band for fun, writes art reviews for a small magazine, and volunteers teaching sewing classes to inner city youth on the weekends. In her heart, she hoped she would have found more success by now, but tries to remind herself, art isn’t about accolades.
I imagined my existence if I had been born into one of the many communities of the world where healthcare is nearly non-existent. Like most of the world, I wouldn’t have been born into priveledge, with affordable doctors nearby. I wouldn’t have had wholesome food to eat daily, and may have been exposed to the elements, civil war, and sexual acts of violence against girls. If I had developed the very same condition at 22, I wouldn’t be alive at 35. That version of me wouldn’t exist. I would have died a slow, painful death, like so many others with the same diseases that we in the US call “chronic,” and manage day to day, other parts of the world calls them “terminal”.
The door slides again. I step back through the wormhole.
I’m here in my life. In my own body. In my own bed. In my own reality. There is no other fate than mine. There is no other Mary.
This was a challenging, yet powerful exercise- but it did hurt. There were others I didn’t write about here. In the end, it was a success, I did shake off that alternate dimension feeling.
This is the life that was set aside for me. In all of the realities I could imagine, this is the only one where I’ve been molded, strengthened, and shaped to conquer my specific challenges. I am the person whose eyes are prepared to see unique beauty only I might see. I’ll leave only one set of footprints behind when I’m gone.
There is no wormhole I’ll ever slip into. No sliding door waiting for me to step through and merge into my rightful life.
I’m not entitled to any other existence.
This is my one and only life, with all of its shortcomings, pains, privileges, hopes, and unknown future.
It’s not over yet.
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.
Just over one year ago, I wrote a post which I now believe may have been a premonition. On one of the last days of 2015 I wrote No Fear Campaign, 2015 and I have thought back to that post as well as revisited it so many times throughout this past year.
I was fueled with courage at the beginning of the year, but I had no idea why I would need it. And then the bottom dropped out of my life and I REQUIRED that courage more than ever. I suffered so much loss this year, I made a huge transition, fought a difficult battle, saw several new doctors, visited the hospital, started physical therapy, home care, and have been exposing myself to many new faces, new experiences, and could never have imagined any of this just one year ago. It’s true that this year, I’ve been in constant crisis management. But it’s also true that I’ve been managing my own crisis. That might seem like a given, but illness doesn’t always allow us that luxury.
Last year, the messages to be courageous seemed to jump out everywhere: Have no fear, do not fear, I am with you, be not afraid. If God wants you to hear a message, you will see it constantly whether it is on Facebook or Twitter or television or out of your home or in your Bible- if you feel like there is something that keeps popping up in front of you repeatedly, that message is JUST FOR YOU! Truth finds you. You can try to ignore it, but if God wants a message in front of you, He will repeat it and confirm it. It’s not a coincidence. And I am so thankful I grasped the message to have courage when I did. It truly saved my life this year and courage continues to change how I move forward.
Things are so hard now, SO HARD. But I’m planning to beat fear once again, and go to my sister’s wedding… in 7 days. This is possibly one of the scariest things I have ever attempted. And yes, I am afraid. As it comes closer, all of those I CAN’T thoughts are terrifying at times.
These posters were made around the end of last year. Around the same time that I wrote No Fear Campaign, I wrote a few other, fearless-themed posts. In one piece, I said: “The strength comes for the step you need it, not days or months ahead.” That is what I am counting on for this wedding adventure. And it helps give me peace that God will strengthen me and my body to do what needs to be done when the time comes, for my sister, and for me.
Whatever trials wait for you tomorrow, and paralyze your heart with worry today, I hope you feel comforted remembering you can call on that added strength and courage at the moment you need it. You aren’t walking your path alone.
~Peace be with you~
“Freedom lies in being bold.”
― Robert Frost
Secretly, some days I think if he had died instead, this would all be less complicated. I know you’re cringing. I am going to lose some of you right away for saying that. It’s totally perverse, and I feel so much shame for thinking it, but I have thought it.
It’s like when I hear people with a rare disease say they wish they had cancer instead. CANCER? What?! No one wants cancer. That’s a horrible thing to say, but when doctors, family and society can’t comprehend how severely you are suffering, it is not rare at all for people to say, “At least if I said I had cancer, people would take my suffering seriously.”
When a loved one passes, that memory is in tact. In time, the very best memories rise to the surface. Their imperfections drift away. You cling most to the joy and love you shared, and their best attributes shine. That’s what I want for him. I want his legacy to be in tact, and to be part of my heart… for him not to have broken it.
In a divorce, even if you shared a long, loving and sweet relationship, the breakup and divorce process turns it all sour. I wish there were a way to put 16 years in a time capsule, and then just sweep away the last 9 months.
I want so badly to remember him as he used to be. It’s impossible to look back at the relationship with the love and sweetness it deserves without the ending shading every single moment beforehand. That’s how bitterness blooms.
I don’t want the best years of my life to be erased by a few months of the worst. Many have advised to just let go of it, but you can’t just punch out half of your life. I can’t move from this so quickly. Especially not when it ended so abruptly. It deserves to be felt. I loved him that much that I’m willing to feel it all.
I want to grieve the man I love like the widow grieves her departed. I want to cherish the love we shared like the treasure I believed it to be. I want to bury our marriage so it rests in peace.
My other secret is that I pray for him. That he is well, and God is taking care of him.
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!
Breathe. Don’t pass out. Keep moving forward. One foot in front of the other. Pay no attention to your pain. Focus on your breathing. Focus on your legs not giving out. Don’t fall down! Ok, throwing up would be the worst right now. Here come the shakes… Breath girl! The light? Do we have to do the light? Oh no, there goes your head. I can’t see, I can’t see… This hurts too much. I can’t do this. I have to do it. Okay, let’s do it.
This was this morning in physical therapy. My physical therapist comes by once each week. Some days are good, some days are bad. Today was a great day, so we decided to do something I’ve never done before… at least not for almost 5 years: go outside.
When I go to doctor’s appointments, I’m usually taken out from my bed in a wheelchair. I have a face mask on, ear plugs, a head set, and I keep my head down between my knees to keep my blood pressure from plummeting, so I don’t faint. If I’m in the seated position too long, over with my head down, I have to get out of the chair and lay down on the ground with my knees tucked to regulate my blood pressure, breathing, and head pain. (Laying in an elevator or doctor’s office waiting room hasn’t made me any friends-yet.) When I get to the car, I lay in the backseat under pillows and blankets for arduous the drive.
Today, I wasn’t going anywhere but the porch. It was a warm overcast day, and happened to be very quiet on our road. What better day than this to do an “exposure” to sound and light? I don’t have OCD or an anxiety disorder and I’m not in Cognitive Behavioral Therapy, but desensitizing your body and brain to stressors and pain are very similar in traditional Physical Therapy. My PT uses Cardiac Rehab Therapy and Pain Rehab Therapy with me to get me stronger and moving… and it IS working. My fatigue is lessening, I’m stronger, I can tolerate more sound and light than I used to, I don’t pass out like before, and I’m progressing in general.
But today, there was another sensitivity I didn’t expect to encounter…
I bent over my brand new walker, slowly moving out toward the door for the first time, swapping my eye-mask for dark tinted sunglasses. Because I was pretty much blinded by the daylight, I was trying to maneuver awkwardly out the front door. My brother had joined in with my physical therapist to help me on my pilgrimage. I was so focused on all of the physical aspects written in the first paragraph that it caught me so off guard when my physical therapist wrapped his hand around my waste and grabbed my hand to help me out. That’s the moment I choked back tears. That’s the pain that hurt the worst.
It wasn’t the horrible pain in my head, the ringing in my ears, the screaming sound of birds chirping, or my heart racing from trying to be on my feet for too long, it was the caring touch of another person that reminded me so much of my ex-spouse… that almost took me down.
Maybe that sounds creepy to you, but if you have a condition like CRPS/RSD in which people around you are unsure where and how they can touch you, so much that they decide it’s best not to at all, you understand the touch aspect of this. Or, if you are no longer with your once-significant other, you will understand missing supportive touch, like a pat on the back, or an outreached hand when they notice you need help down a step.
Today was 2 firsts. I went out onto the porch successfully. I knocked out another goal! Wahoo! I turned my low pain day into a triumph. It was also a day I realized how much I miss supportive touch. I really want to find ways to incorporate touch back into my life, however physically painful, so it isn’t this emotionally painful to be without.
“Touch has a memory.”
― John Keats
You read my blog. And you might read my tweets. You might even know me on facebook or in a support group. But, chances are, you probably don’t know what has been going on in my life this past year. For the next month, I’m going to crack the lid off of my mess. For better or worse…
That last line is ironic for more than one reason.
My husband of 14 years divorced me just last month. And, my sister is about to get married this month. Oh, how the universe laughs at us!
What else? You probably know that I have had chronic pain for the last 11 years, and then 4, going on 5 years ago, I became bedbound due to a failed procedure causing several other chronic illnesses. I’ve had to fight for my life, my pain has been…I can’t find an adjective to describe this pain…and the illness I experience is like every part of my body is at war with itself.
What’s new with my health? I am in home physical therapy, I’ve hired a home care professional, and I believe I am beginning on a slow, steep path to “recovery.”
I haven’t been physically able to tolerate more than whispering sound and very low light for years, nor have I been able to walk outside, walk unassisted, sit upright, or stand up completely without passing out, but I am planning on attending my sister’s wedding ceremony at the end of the month!
Yes, please take that in.
This will be the first time I have left the house, except for being taken to the doctor or emergency hospital visits in over 4 years…and I will be my sister’s maid of honor. It’s huge, and it has been an amazing motivation for me. Now that the day is getting so close, I admit, my determination and excitement is wavering as reality is sinking in.
As I prepare for the coming wedding: mentally, physically, and emotionally, I will also be dipping my baby toe into the divorce, my loss, the transition, and possibly, at times, wholly plunging into those bubbling emotional waters- once I start writing, who knows what will happen!
This has never been a journal-type blog, but for at least this month, I am going there. You are invited, if you want to come with.
New page, DisabledandDivorced just launched.