I’m sitting on my front porch, enjoying the quiet sounds of summer and clicking away on my laptop. In the last few months I lost sight of who and what are important to me and it took a recent very difficult situation to cause me to step back, evaluate, and adjust my life. I think that may be the way of learning and the human spirit – realization, self-analysis, adjustment, action. I am now taking action to make some corrections in my life. I’m making changes for me – not always a popular move but I’m moving forward none the less. I have a spiritual teacher – I call her that because she is truly wise and lovely. She is a life gift to my soul. Teresa tells me over and over – “you are enough.” This mantra of sorts was a completely elusive concept to me when she shared it. What did that mean? How could I become comfortable with such a foreign concept especially when I had held so protectively and deeply in my gut that I wasn’t enough – that my disease and my physical limitations made me less. How would I find a way to truly feel this? It was a long build up to have these thoughts so deeply seeded – how would I uproot them? And then – let them go.
I was like most 20 something’s; I had a bright future in my career, I married a wonderful man, and I was finding my way and enjoying life.
And then I was sick.
Looking back the progression from healthy to sick was quite a bit slower but it felt that way. It felt that my life had taken a wrong turn and I was terrified especially since I kept circling back and couldn’t find where I went off course. I had to stop working which crushed me and my self-worth and I had nothing to focus on but looking for an answer to the pain and my feelings of failure. I wondered what had I done to bring this on and how it could have been avoided if I was just smart enough, good enough, or worthy enough. There is so little energy available when we are in the throws of illness and I lost my ability to feel joy – pain and disease in their hay day only leave enough room to simply exist. Because of this, I was not someone I wanted to be around. I know I was a chore and a bore to many especially when they expected the Jenna of old to show up – crazy, laughing, and flamboyant. She was lost to me and to those around me – we all missed and hoped for her return.
Years later after finally receiving my diagnosis of Ankylosing Spondylitis I vowed to fight – to find a better, healthier, more balanced life. I needed to find a way out of the depths of despair I felt from the constant struggle against the pain and fatigue. It took years of doctor’s appointments, trial after trial of different medications and combinations of medications, it took twice weekly sessions with my Physical Therapist. And the pain took its toll.
But I did fight and claw my way out and – I started to get better. It was a slow process that included incorporating tiny pieces and bitty steps all working together to be enough better to feel like the heavy weight of the deep overwhelming illness lifted. I slowly was able to get back to working and activities I thought I would never do again. I credit a lot of this to the biologic anti-TNF’s that help so many with AS but I also truly believe that it was simply time, work, learning, and commitment to find the right way for me. I had to find that way – the way that worked for me – it is different for everyone but I firmly believe that we can find the fight that will get us all back to a better level of wholeness and happiness and learn a new way forward – even if our lives look a little different than originally planned.
I find belonging and understanding in our community charge to – “Fight Like A Girl!” AS WE SHOULD! For those of us facing chronic or life threatening illness, the term is used against disease.
Fight – verb: to contend with or against an enemy in any manner.
We “battle cancer,” “beat pain,” and, “fight for our cause.” We use strong words when our adversary is strong – we need these words and beliefs in order to win, in order to come out all right, in order to simply survive.
And then we need these words to fight for our old selves.
When we have no choice but to enter this dance for our survival the fight can sometimes become too familiar. It becomes a place we know too well and we enter a dance of anger and bitterness. I’ve been there. It is an easy place to be when you are struggling with the question of “why me?” We can’t see that some fights are not worth the expense of energy. No matter how hard we try to look for the positive or the bright side of things, we just see the whole world is against us and that we’ll never catch a break. I worry that when we spend so much time in the ring that we can lose sight of which situations in our lives aren’t a part of the fight.
I will fight Ankylosing Spondylitis with every bit of every piece of me and fight for my quality of life, my family, and my livelihood but I will not engage in emotionally or physically draining circumstances – they are not worth the toll on my ability to fight my biggest enemy – my own cells attacking my own cells.
I will look for where I need to uproot old thoughts and plant anew!
I am enough!
This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.