Those of us fighting Ankylosing Spondylitis or other illnesses know that every day is a test of our courage and strength. We question if today will be the day when we find a cure, our energy will be restored, or even if we will find a bit of relief for a few moments. Being that it is the start of the new year, I couldn’t help and look back for a moment to realize what an adventure my loved ones and I endured in 2011. Between the daily struggle of my chronic illness, my mother’s continued health battles, my daughter’s cancer fight, and unfortunate loss of her eye, I quickly realized as hard as it was at the time, in the end, we survived. I saw a quote by Josephine Hart that says, “Damaged people are dangerous. They know they can survive”. I found so much truth in her words.
I clenched my fists each time my doctor found that my medicine wasn’t working to help my AS. I would fall into that ever popular deep despair moment. I switched meds 3 times in a year. Those of us with AS know that means we have to wait a few months for the new one to hopefully kick in and give us some relief. I would cringe at the thought of having to start all over. The need to depend on the pain medicines to get me through those few months was extremely overwhelming. I would fight my body to be able to go to sleep at night in comfort and hope to wake in the morning with a positive head on my shoulders. I was exhausted fighting my own mind and body. During the day it is my job as a wife and mother to be strong for everyone. So I would strap on that all-to-familiar smile and move forward. Opening jars, holding a handle, grocery shopping, tying shoes, or even my purse was a struggle. The bruises and fatigue was really beginning to take over.
Throughout my constant AS battle my mother was having her own boxing match. My mother has Autoimmune Liver Disease and has been fighting to win for many years now. On top of that, she had several strokes in 2011 which ultimately has put her in a nursing home to help her rehabilitate to lead a normal life again. She is working hard daily to improve. I will never forget when we got the call that the doctors didn’t think she was going to make it through the night so we needed to come say our goodbyes. I live in a different state than my mother and at this very time I was just informed my daughter had cancer. I will never ever forget how helpless I felt. How was I to decide? I equally wanted to be with my mother and daughter. I knew if mom could see me, her living miracle, that she would find the strength to be one too, but I couldn’t possibly leave my daughter. I needed to be Alexandra’s strength as my mother was for me. The doctors didn’t know much about the type of cancer my daughter had (Alveolar Soft Part Sarcoma) and we needed to be aggressive. My aunt reminded me that if my mother knew what was going on that she would want me with Alexandra. That no matter what happened that night, I needed to know there was no decision to be made, I was right to stay. I admit now that during my daughter’s fight there was nobody I wanted by my side more than my mother. My husband was amazing and supportive as usual, but if you have a mom like mine, there is nothing quite like a mom’s support when you are feeling so helpless. I remember deciding that I could do this. I would find the strength, keep positive for everyone and move forward. I am not sure if it was the inspiration of my daughter’s strength with her new diagnosis at the young age of 13 or if it was just a matter of knowing what needed to be done and doing it. I decided to focus on the good instead of dwelling on the bad.
There was a lot of positive in 2011. We bought our first home. It is beautiful. We were blessed to meet a lot of wonderful people. I renewed old friendships and strengthened new ones. Found the power and appreciation of prayer. Alexandra had a successful surgery to remove her tumor and she is now cancer-free. My mother proved the doctors wrong that night and she is working hard to get well. I have truly found that there are amazing, kind and supportive people in this world. It has renewed my faith in the good that exists in this world. It couldn’t come at a better time. A time when my whole world felt like it was crashing down, I was lifted by family, friends and even complete strangers. I am truly touched and will carry those moments with me forever.
In the eyes of doctors I may be damaged due to AS, my emotional roller coaster, and my other medical issues. Their opinions in the end really don’t matter all that much, because I know what I see when I look in the mirror. I see a survivor. A force to be reckoned with. An amazing warrior with strength enough for the world if necessary. I am thankful for every moment, every struggle, and every despair that has made me who I am today. I will not look back, only forward. My scars tell my story. I am at peace with myself. I know that God has a bigger plan for me. I may not know what it is yet, and I may never know, but I figure if He has so much faith in me to present all of these hurdles, who am I to question His judgement. I know that I am dangerous. I will continue to survive anything thrown my way. My hope for you is that you will do the same. Get dangerous!!!
The informational content of this article is intended to convey general educational
information and should not be relied upon as a substitute for professional healthcare advice.
This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.