Coming Back to Life...

In Breaking Down, I felt that not only did this disease cripple my body, it also crippled my hope for any semblance of a future. All of my hope for a nice normal adulthood was steadily drained out by all of the pain, stiffness and inflammation that I faced each and every day. I went from a healthy childhood of climbing trees, playing basketball, and riding bikes to a likely adult future confined to a crippled body. I was rightfully devastated and couldn't fathom that it would ever get any better. Though somehow, it eventually and slowly did improve, but not without a series of losses, battles, successes, and several RAD treatments.

Really, it wasn't until later in this present year that I knew the moment had arrived for killing the past and coming back to life.

 

A number of events and realizations came together in some oddly perfect synchronicity to help me realize the mere existence of a shining sun. My work is generally in helping the public obtain the necessary services that they need in order to be well and maintain or achieve health. Helping the community is the whole purpose in this work. As part of this, I had to speak publicly to a large group; something that normally left me a nervous wreck. But not this time...I faced my fear and told it that I didn't need it anymore. It somehow actually heard me and faded down. After speaking, I felt this amazing confidence. It affirmed for me that if I could do this, so too should I become involved in the arthritis community in my local area. My success at publicly speaking had been a sort of confirmation to me that I could reach out and be okay, and not panicking as I had for so many years. Through my job, it's common to provide people with information regarding a number of community resources to help improve their lives. And I wondered...do we even have that for arthritis patients in this area anymore? And so I reached out to the leader of an old arthritis support group in this area and reconnected and became inspired.  I had also started strength training via a modified Starting Strength program and could actually feel strong within my body; a feeling that I never imagined could be possible after my diagnosis. It became fully cemented in my heart and my mind that I should use this blessing of successes to somehow make a difference to other arthritis survivors, especially in my community.

For the first time, I felt absolutely alive because of this disease instead of destroyed by it. It's a feeling that I considered to be unimaginable yet there I was experiencing it. A fair bit of it was made possible by my treatment for RAD and my tendency to recognize and obtain help as necessary. Just because we struggle, it does not mean that we should always end up at rock bottom with our health, hearts or minds. For nearly 7 years now, I've been treated via Humira injections. It made a most amazing difference in my life. I don't know how exactly or why it has worked so well for me but it has been the ultimate blessing in allowing me to climb my way above ground and at least feel the sun's rays.

Much of my coming back to life has been a long time coming now. And it's a rather convoluted story that will take more than this blog post to express fully. Much of it began 10 years ago, after I very nearly died. I had the opportunity to go, yet I refused. That experience planted the first seed in my heart to fight and to not give up on life, giving me the desire to survive for the first time in years. Even my very sane and absolutely fantastic medical doctors considered my survival to be a "medical miracle". That was the first time I felt myself shift - coming back to life quite literally with that second chance secured into my heart via a mechanical Mitral valve. But my battles were not yet fully over. Just as developing and being diagnosed with RAD was traumatizing, so too was the near death and the resulting two open heart surgeries.

There are bits of a person that shatter as one fights to survive and overcome trauma. Because of this, the bits don't quite fit back in the same perfectly edged way anymore, with little crumbs falling and slipping away into the winds of time. So we try to glue ourselves back together as best we can with the remnants not quite fully fitting. Along our paths, we try to find a way to fill in those missing gaps by planting in seeds of this change so that we can hopefully grow from within and despite the shattering damage. And then we try to go out and live our lives at the same time, working to catch the rays of our shining sun to fuse our healing into a new wholeness. For some, the path may reveal itself easily. For others, there may be rocks in the road that trip them up and cause them to fall shattered again and again.

I have tripped for so long... but this is the first time in such a very long time that I can feel this shining sun healing me back into life, whole.

Breaking Down

I will never forget the Summer of 1994. It was the most amazing Summer, though I did not fully realize this at the time. My best friend Natalie and I spent that Summer riding our bikes all over the neighborhoods, laughing and joking as happily as two teenage best friends could be while having the best time ever. We rode to the local Elementary school, playing on the playground, riding the swings, chatting and laughing the day away. We watched MTV videos, back when they still showed videos. She exposed me to Nirvana and Pearl Jam's music. We swam at a local pool and gossiped about all the other teens hanging out there. We had the best time ever that Summer as two 15 year old teenagers without a care in the world.

The reason why I consider it to be the best Summer ever was due to that specific time being my final season of normal and complete health. Later that Fall, Rheumatoid Autoimmune Disease, then only known as Rheumatoid Arthritis, set in and took over my body, mind, my life. Eighteen years have passed since that day, multiple RAD treatments tried, many ups and downs with my health and my choices in life, Natalie passing away...all of which culminated in my realization of Acceptance that I cannot allow this disease to destroy my heart, my mind, my soul, nor my hope. I must survive and live despite this disease.

I first noticed something seemed off later along in the Fall semester of gym class. The start of gym class always comes with an adjustment period for the body due to the introduction of regular and regimented physical exercise. It was an aerobics class, step included and I steadily adjusted to the exertion. I felt great! I could stretch, jump, bounce, step up and step down and move! And then towards the end, I noticed that I felt stiffness. My body was not responding as it normally should with each movement. I could not bend as easily. I tired out easily. And I ached, even though I was past the point of the  usual aches that come with starting to exercise. I remember thinking that I just felt weird. Something just seemed off but I knew I didn't feel sick. I just felt like my body was moving backwards in how it should feel after exercising. I had no clue just how big of a deal these symptoms would become.

Over the course of the school year, my symptoms steadily grew worse. Keep in mind that this was before the ability to "Google" everything. I had stiffness, inflammation, pain. At first, my parents thought that maybe it was an extreme case of growing pains. Maybe it was caused from a too old childhood mattress, which was promptly replaced. My symptoms continued. The fingers of my hands did not bend easily, joints inflamed and stiff. It was difficult to get out of a seated position, along with it hurting like hell in my hips. I used to be one of those kids who could dart promptly out of the classroom at the end of class. Not anymore. I became the last kid to leave class. School took on a whole new meaning for me due to the cycle of getting to class, sitting down for nearly an hour, getting up to go to the next class/locker, sit down for nearly another hour, and repeat. I can still recall the memory of some senior jock making rude comments from behind me while walking in the hallway "why is she walking so slow? Come on!", etc. But even in my embarrassment, I could not walk any faster. It hurt so much. Honestly, I was lucky that I could walk at all.

I knew I was steadily becoming crippled and there was not one thing that seemed to change it. My parents knew something was going on but it was not until my Mother saw the nodules on my finger joints that she knew without a doubt as to what had happened within my body. In my family, we knew of one cousin on one side of my family who had been diagnosed with Juvenile Rheumatoid Arthritis earlier in childhood. So we knew that the possibility existed that my immune system had activated such a disease. So off my Mom and I went to the doctor for a possible diagnosis!

The doctor, being as she was a general practitioner, stated that it seemed likely that it was Rheumatoid Arthritis, judging by my symptoms. I would need tests and likely need to see a specialist. Unfortunately, that had to be put off for a little longer as we were in the midst of getting ready to move and my Dad knew that the Rheumatology department at our new locale's base was known to be fantastic. So the solution for my symptoms in the meantime was a prescription of Naproxen...which hardly put a dent in relieving my body of symptoms.

Being diagnosed with a new health condition can be a traumatic experience at its most base level. It is normal and perfectly healthy to experience the 5 stages of grief: Denial, Anger, Bargaining, Depression, Acceptance.

At first, I did experience emotional relief, a temporary acceptance. I had an answer for my symptoms. I now knew why my body was reacting in such debilitating ways. I felt so relieved to know that it was a known disease and not my imagination. And then I got angry. I was raised Catholic, so the "Catholic guilt" played well into my anger: "What had I done that was so bad as to deserve this disease?!" I know I was stubborn as a child (apparently during my early years, my Dad nicknamed me Bronco after Bronko Nagurski) and did not enjoy authority over my childhood whims, but did it mean that I deserved to feel so much pain? What had I done to deserve this? Keep in mind, I was a teenager. If I was home alone, I used that as my time to scream at God about why this was happening, what had I done and to please, please take it away. I promised to be good. I promised that I would obey my parents, I would do better, if God would just take this disease and all of this pain away.

Thus began the stage of bargaining. Maybe if I was better, maybe it would go away? It didn't. What this disease showed me at the time was that everything that I thought I was and could be was gone. I was not healthy anymore. I could not climb trees anymore. I could not ride bikes anymore. It hurt to get up, get dressed. I couldn't get my arms up high enough to wash my hair, having to bow my head down to make it easier. I could not bend my fingers, especially far enough into a fist. It hurt to walk. It hurt to sit. It hurt to lay down. It hurt to even sleep. I spent many late nights sobbing my heart out over this disease and its pain. I stopped caring about my future. Honestly, I did not believe that I had much of a future. Everything that I knew of who I was seemed no more. There was only this constant pain from this stupid disease that had no right to take over my body, my life. I had to resign myself to live with a disease that destroys. And for so, so very long, I let it destroy me. I couldn't escape, body, heart, nor mind. I couldn't stop breaking down.

Florence & the Machine - "Breaking Down":