Independence is the Key to Building My Self-Confidence
Losing my independence to a progressive disease has dominated my thoughts and emotions for twenty years. I kept comparing the quality of my life to the life I had before the disease was activated. Grief, frustration, anger and sadness are completely justified and supported by our friends on social media forums, much-needed validation of all we suffer day in and day out. But I hadn’t yet discovered online support forums when, in 2009, I shifted my literary fiction and professional essay writing to autobiographical disease-themed blogging on an obscure blogspot site titled "Doc, It Hurts When I Do This..."
It takes a special person to be married to an MS patient
In the earlier years of blogging, my writing voice sported an edgy, wry and upbeat tone with layers of gratitude smoothing the rough spots. Gratitude aimed often at my then-husband, who made me laugh every day and helped me through some difficult times. But after six years with him, things abruptly changed.
It takes a special kind of person to be married to an MS patient and he had tried very hard to be that person. When he knew he could not, he delivered me back to my mother who lived six blocks away and divorced me. Eighteen months later, my mother died.
A positive feeling of aloneness
This is not about grief, nor is it about feeling abandoned and lonely. I felt all those emotions, of course, but they are to be expected. What came over me on the first day we delivered my mother into professional medical care three months before her death, was a positive feeling of aloneness in a way that offset my fear, emptiness, shame, and guilt – things that felt like ligatures in a string that had strangled me in my relationship with my husband and transferred itself in a smaller way to my mother’s home.
Guilt and shame have dogged me in every relationship from childhood to the present. Before my MS became active, before I even had the words for these destructive messages. I was always worried that I wasn’t giving enough, not saying the right thing, missing cues that others would have picked up on, letting that person down, making them feel alone, misunderstood and abandoned. I felt it with my parents, teachers, and friends. It was a constant worry while I was outside my safe zone, my bedroom, where I could look inward and find a peaceful, non-judgmental space.
Learning to leave my comfort zone
As an adult I coped better and better outside my safe zone, though I was timid, mostly avoiding travel and new experiences, denying myself opportunities that would develop my independence. Still, at nineteen I did start to venture outside my comfort zone, taking risks such as sitting in with my teacher’s jazz quintet at his gigs. During those two years, I learned how to redirect my nervous energy into my performance. I pursued this risk because I had a solid foundation of self-esteem, though I lacked confidence. Taking risks and doing the scary thing is great for building self-confidence.
Finding my independence
Feeling truly independent only came with the loss of loved ones and its residual effect of leaving me alone to figure out how to make it without a safety net, both emotionally and physically. I met the challenge head-on. For example, I haven’t fallen since the day I started living alone and that was in February 2014. I love living alone in an apartment. I cook, do dishes, and take out the garbage myself. I manage my finances so well that my credit rating is up to 809. To this day I feel pride in small accomplishments. For example, I used to ask for help taking off a necklace I wear 24/7 but have to remove for scans and surgery. The last time this happened a nurse took it off for me, but this time I resolved to put it back on myself, fumbling with the clasp for a good twenty minutes. It was then that I realized most of my failures are about emotions getting the better of me. I get frustrated with my numb, weak fingers and give up too easily. It felt as if I was wearing a baseball mitt while trying to pick up a chain so tiny you could only see it under a microscope. But I was determined.
I put down the necklace, took a deep breath, and calmed myself. Then I picked it up, squeezed the tiny clasp, and threaded the little loop onto the clasp ring. It worked.
And that, my friends, is independence.
Have you ever experienced any of the following financial struggles due to your MS?