This is, Mikayla,
Headstrong, courageous, empathetic, determined, loving, and optimistic, all while in the face of pain. In the face of obstacles so big they could crush you at a moments notice. With her unwavering hope and will to make this life, her life, an adventurous one, Mikayla encourages us to see all that we have (the people, places, and things...) as enough.
As more than enough. As every reason to keep pushing forward, even when the world around you does not seem to be working in your favor. Even when you find yourself trudging through the deep waters of anxiety and depression, desperately trying to make sense of the slew of symptoms coming at you from all directions, Mikayla helps us to see that this illness, so often seen as our weakness, can instead give us the strength that we need to create a life more than.
To take all that we already are, and put it towards a life we fall in love with over and over again.
This is her story...
It was a gorgeous sunny day back in May 2013; I was sitting on the glider outside of my grandmother’s house waiting for my sister to get home from her day program when I received the phone call that would forever change my life. My childhood neurologist whom I had seen for years, gave me a call and said, “Mikayla you have Lyme disease, I’ve called in a script for Doxycycline that you must start immediately.” I remember having the biggest sigh of relief yet I’m pretty positive I cried/laughed all at once. Lyme Disease? Finally my prayers have been answered; I’ve received the answer as to what is wrong with me.
I was more than ready to treat this and move forward with my life but clearly the joke was on me.
Before I knew I had Lyme disease life was complicated to say the least. I always felt like I was trying to prove myself to everyone. I never felt good enough or deserving. I tried incredibly hard in school and in sports all for my father who never even seemed to notice. I always had your ‘typical’ tummy aches everyday before school, random aches and pains, but they were always just brushed off. As the pain and neurological symptoms progressively became worse in high school my problems became labeled as anxiety, depression, growing pains, and sport injuries; but I knew this was wrong. I know my body yet everyone else thought they knew it so much better. I saw multiple neurologists who of course kept throwing pills my way and when they wouldn’t even skim the surface of my problems, they said I needed therapy. I was so exhausted physically, mentally, emotionally, and spiritually so I gave therapy an honest chance but that only brought up problems I already knew about. Now don’t get me wrong, therapy I believe is an extremely beneficial aspect of healing from Lyme, but it just wasn’t right for me at the time.
When I finally found out it was Lyme disease I began your typical treatment of doxycycline yet things just kept getting worse. For three months I stayed on doxycycline until August rolled around and I finally met one of my angels on earth, Susan Neuber. Ever since August 2013, Sue has been treating me for Chronic Lyme Disease. We discovered that it was likely I had it for at least six years before I started seeing her. Here’s the thing with Lyme – you’re so insanely stoked that you’ve finally found your answer as to what is wrong but you have no idea the journey you are about to embark on. I wish I had known so much more about Lyme before I was diagnosed.
This is next to the worst illness you can go through, especially alone.
New symptoms pop up daily and when you have countless amounts of not only doctors, but also friends and family telling you this is all a lie you really do start to believe you are crazy. Lyme Disease doesn’t only mess with your joints and muscles, it can wreck havoc on your brain. I’ve gone through severe bouts of depression where all I want to do is die. All I think about is dying. I came across one of my journals the other day from 2014/2015 and as I was flipping through the pages I was soaking them all from the tears flooding down my face. Although they are tears of sadness and pain, they are tears of hope and happiness that I was able to overcome those months of depression. You really never notice nor feel how strong you truly are until you reflect and look back at your darkest days. Some of the things that keep me pushing through these dark times are my mom, my grandmother, my sister, my dog, other ‘Lymies,’ and the random ones that check in on you when you least expect it. I really don’t think people notice the affect they can have on others.
When someone you would never expect reaches out it really makes a world of a difference. That is where I get my strength. That is where I find the courage to hang on.
I feel as though I have just about gone through all the stages of grief. The isolation, pain, and depression; I have faced far too many bouts of severe depression where I isolate myself from the world for months at a time. Just four months back from now was when I had hit one of my lowest lows. I was in so deep that I really had myself believing that this was it for me. I was going to die and I just didn’t care anymore.
Every three hours I was taking Benadryl just to turn it all off. I couldn’t stand being awake any longer because my mind just kept racing and racing. Reflecting back I think deep down the reason I kept taking Benadryl was to just shut my brain off long enough in hopes that I would wake up in two hours and feel like “myself” again – as if I knew who that was. Anger. Aside from Lyme rage I think anger is one of the stages I don’t fall back to a lot. I was so over being told I was crazy and that nothing was wrong with me that when I was finally told it was Lyme Disease I was too happy to finally have a concrete diagnosis to even consider being angry. For awhile though, I was bargaining with all of the thoughts of ‘what if’ and ‘why me?’ Those times always followed with tears and typically the depression but then one day I think it just hit me. I believe that we are all given such a unique, special, and individualized life that we can handle and push through. I believe that although we ‘can,’ it is up to our individual selves to build ourselves up to be able to strive through the life we were given. Although for a great chunk of my life I have been trying to survive through this life, I am now learning to live my life with thanks all to this illness. I believe before this illness I never knew how to put myself first.
I was an extreme people pleaser, as I still am, but I am slowly learning to slow down and allow myself to be first at times. I am learning to say no and allow myself to rest.
I am learning that it is okay I am not where I thought I would have been at this time in my life. I am learning to find my purpose in life. And most importantly, I am learning to love myself. I have been told many times that I am not the same Mikayla that I have changed. Although this still feels like a knife being twisted into my heart, I am learning that it is far more than okay that I am not the same Mikayla. I know that I’m not. I have had no choice but to change everything about myself. When your life is turned upside down and emptied out, you have no choice but to start over, pick up some of the pieces but more importantly, create new pieces. Your life is no longer the same once a chronic illness creeps in and that is okay. Those who are true friends and true family will be there to help you pick up these pieces and to help you create a new life. Acceptance, reconstruction, and hope. I am so happy to say that this is where I am today.
I believe I have finally picked up those pieces of the ‘old Mikayla’ and am ready to create the ‘new Mikayla.’
To say the least, this is far more than a long road trip; this is a life long journey. Life will forever continue to place obstacles in my way but that is what keeps it interesting. That is me living my life. I am more than Lyme.