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?
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
My sister manages a student property center near one of the best universities in the country. It is known that more students from that school will withdraw due to psychological breakdowns and will have more suicide attempts than any other area college. She has already had several incidents this year at her property alone that ended with students being checked into the hospital for said reasons. They are all the most elite academics, but now, they are in competition with one another. Once the valedictorian of his high school is currently struggling to pass his college courses. So why are even the best and brightest failing to cope with the pressures of life?
I’ve been reading the book Learned Optimism by Martin Seligman. There was an entire revolution in psychological treatment called “Positive Psychology” which began after he wrote this breakthrough book in 1990. Before that, psychological practices were geared toward treating mental illness. Seligman asks the question, why aren’t people fulfilled and thriving when we know more about human behavior than ever before? Now, psychologists and counselors help people to become more than just not-sick, but actually thrive.
In his book, Learned Optimism, he theorizes why there is more depression, anxiety, suicide, and drug addiction than ever before when we live in a happiness-driven society. He believes it is much, much more than public awareness of mental health driving diagnoses. Children were once taught how to overcome obstacles and persevere, but teaching practices have shifted to the current focus of boosting self-confidence regardless of efforts. He proposes that individuals of prior generations were raised to believe they were surrounded by various types of support, and that sense of community has been lost today. In the past, people realized that their support system shared responsibility for every success, failure, and overall person they became. Because there was an awareness that outside forces contributed to their lives, when their hard work paid off, they were sharing their triumphs; when they failed, they wouldn’t fall too far or stay down too long as they had a safety net.
In the past, Americans valued country, faith in government and patriotism. People were raised connected to a personal faith in God, organized religion provided a community, connection with family was the cornerstone of society, and people were inclined to make close connections inside of their local communities. Just the sheer idea that others believe in you can be the difference between a devastating pitfall that derails your life and a curve ball which you can bounce back from. Today, we don’t grow up ingrained with the same surrounding support system, lasting connections, or faith in God and country.
Society teaches that your successes are your own to take pride in and celebrate. You are paving your own way in this world. There is a great focus on self-determination, but the tools for coping with inevitable life failures are incredibly lacking. We are taught that personal responsibility and success is everything, but when we fail (as we all do), the personal fallout can be devastating.
I was already planning to write this piece on Learned Optimism when I happened to read an article on Resilience and was surprised to find that the number one quality suggested in becoming more resilient is to create the same types of support that past generations grew up with (as in Learned Optimism). Surrounding yourself with close connections, friends, family members, becoming more connected to faith, plugging into community, and making permanent, lasting relationships with “people who affirm you, recognize your strengths, natural, innate abilities, and provide the support and acceptance you need” will increase your resilience [Mary J. Yerkes].
Other ways to become more resilient: accept good enough, focus on what you can control, find meaning in life, accept advice from your loved ones, take care of yourself, ask for/accept help, don’t be surprised when life changes suddenly, expect things to eventually get better, set goals you can achieve, laugh. Being resilient isn’t about silencing yourself through turmoil or ignoring your emotions, but resiliency is a method of utilizing multiple positive coping strategies along with a mindset that is postured to “roll with the punches.”
The author of Learned Optimism says, “If we habitually believe, as does the pessimist, that failure is our fault, it will undermine everything we do.” Pessimists feel personally responsible in all success and failure, and helpless to make changes. This thinking leads to tendencies for depression, anxiety, and chronic pessimists are more likely to have health troubles later in life. Does this mean that society’s focus on self-reliance and self-esteem is creating generations of pessimists? The good news is, both resilience and optimism can be learned!
Learned Optimism by Martin E.P. Seligman, Ph.D.
Chronic Resilience: An Interview with Danea Horn by Toni Bernhard
10 Tips for Building Resilience in the Face of Chronic Illness by Mary J. Yerkes
“Sorrow prepares you for joy. It violently sweeps everything out of your house, so that new joy can find space to enter. It shakes the yellow leaves from the bough of your heart, so that fresh, green leaves can grow in their place. It pulls up the rotten roots, so that new roots hidden beneath have room to grow. Whatever sorrow shakes from your heart, far better things will take their place.”