This has been one of the hardest years in my life. Personally, I like to listen to music when I feel lost, overwhelmed, and need some clarity. I have been listening to this one a lot lately...
"Comes And Goes (In Waves)"
This one's for the lonely, the one's that seek and find
Only to be let down time after time
This one's for the torn down, the experts at the fall
Come on friends get up now you're not alone at all
..... It comes and goes in waves
It all does come and go in waves. I have been lost in a strong tide of these waves for some time now. Waves of pain. Waves of strength. Waves of so much vulnerability. Waves of fear. Waves of depression. Waves of anxiety. Waves of happiness and of clarity. Waves of sadness. Waves of optimism. Wave after wave, and none of them the same. This tide has been drowning me. Stealing every last bit of my energy, strength, and perseverance.
This blog was, and is, supposed to be an outlet for me dealing with the emotional, physical, and mental challenges that come with being a person living with AS. However, I guess I looked at it in a limiting way... For example, how my AS would affect my life, and not how my life would affect my AS.
My emotional tides crash into my AS like a hurricane. With each new stress and each new conflict, I can feel the impact. So much of one's physical condition depends on their emotional and mental well being... you can imagine how this might be amplified with having an auto-immune condition. I'm so aware of my condition these days.... It's like I have a boat with weak keel ( a lengthwise piece which the frames are fixed...also known as the "backbone" of the boat--- See what I did there ;) ) and I am watching wave after wave take its toll.
Every day I feel my spine in a way I am sure I couldn't have before, but I don't remember... I don't remember what it feels like to not have soreness, tenderness, and tightness up and down my spine. Being active, I often wonder what "normal" 26 year old men and women feel in their spine... Is it similar? Not at all? Somewhere in between? I know that at my worst, in a flare, it probably isn't very comparable... but what about every day life? I guess I will never know. What I do know, is that the emotional waves of being a 20 something, dealing what life is throwing me is a very normal thing. I just need to figure out how to own my emotions and my body again so I may better weather the storm.
This one's for the faithless, the ones that are surprised
They're only where they are now regardless of their fight
This one's for believing if only for it's sake
Come on friends get up now love is to be made....
It comes and goes in waves, I
Am only led to wonder why
It comes in goes in waves, I
Am only led to wonder why
Why I, why I try
I have debated long and hard about what to say in this blog and how open I wanted to be. Ultimately, I have decided that there is something therapeutic in being honest with yourself and owning where you are in life... So, here is the source of many of my waves...
In the last year, my marriage has fallen apart. It officially ended this fall. It has been one of the most exhausting and excruciating things I have ever gone through. I don't wish to go into much detail about it or answer questions... All I can say is that it wasn't right anymore and we weren't either. I have no ill will towards him and I am learning to take steps in a new life on my own. This has been the hardest way to personally grow and the emotions have been overwhelming. Through the rough patches and ultimately the end of my marriage, my AS reminded me that I had to take care of myself and work with my body. I have learned about taking care of myself and slowing down in emotional turmoil, but it has not been an easy lesson.
In August, my sweet aunt passed away. It was very unexpected and hard for my family. She also had an auto-immune disease called Crohn's. My aunt had a hard battle with her symptoms and her daily life was greatly affected. Her spirit was great though, and her energy contagious. I felt so lost in emotions with questions and confusion and anger. How could this happen? Why did it happen? I would take walks by myself and cry. I, like the rest of my family, felt so lost. She made a remarkable impact on people in her life. I will never forget dancing the night away with her and my cousin or the talks we shared just two short months before she died. She reminded me how much opportunity there was for life. It is very hard losing a family member, but I also lost the only other person in my family with an auto immune disease or condition. There was something deeper that we understood about each other and what challenges there were. She personally reached out to me when I was diagnosed and made a point to tell me she was there for support. All I know is that her connection with my mother and cousin was so strong, and her support of me so loyal... I try to channel that energy into a positive outlook in living with AS and not against it.
And finally, last month I found out that my dad has stage 4 throat cancer. There are no words for how scared and desperate I felt with this news. My dad was my hero growing up. He never panicked and always figured out how to go after a problem rather than worry about it. He is doing the same now. I have been home with him, helping him get through the awful throws of chemo and its toll on the body. I can feel myself tense up when I feel out of control and helpless. I feel my aching pain grow into a mild pierce of pain. I feel myself building. My dad was my soccer coach, my story teller, and my confidant growing up. He is still my story teller, my innovator, my personal musician, my inspiration, my carefree spirit, and my strength. Through everything he has remained optimistic and calm. I wish I had that energy. His recovery rate is high, luckily, so we are all hopeful. I need my dad in my life, so much. There is so much more for us to do together.
I have spent many nights crying over one event or another, or sometimes at a random movie. All of these events have impacted my life in such a way, that it is hard for me to make sense of what wave will rock my boat and which one will capsize it. I am trying to harness both my emotional and physical well being again. It has been hard. Many days I have wanted to keep busy and my mind off of these events, my emotions, and where I am now. Being so emotional, that doesn't get me anywhere though. I am still just sitting in the middle of the ocean waiting for the next big storm to hit.
Somehow, I need to move forward. I need to know how to emotionally grow and physically maintain. I let myself cry when it comes, and I let myself laugh when it comes. I make jokes when I can, and run when it gets to be too much. I try not to be idle, but also set aside time to think, process, and work on peace. I acknowledge my body and its pain. I try to understand the connection between my emotional waves and its wear and tear so I may be better equipped in the future.
This is for the ones who stand
For the ones who try again
For the ones who need a hand
For the ones who think they can
It comes and goes in waves, I
Am only led to wonder why
It comes and goes in waves, I
Am only led to wonder why
Why I, why, why I fly
I am in the middle of the ocean. Surrounded by ongoing waves of emotions and pain. But I am not getting anywhere by trying to pretend I am not here or that none of this happened to me. It's time to start learning to ride the surf rather than drown in it. I want to be stronger. I want to move on. I want to do what needs to be done next, for me and my family. And if I can't surf quite yet, perhaps I can at least start to paddle out of this bad patch of sea.
Thanks all,
XOXO Amanda
