One of the biggest struggles I have ever faced in my journey with chronic pain is facing the people who did not believe I had an invisible illness. Once the physical scars were gone and I looked totally healthy many people found it quite impossible to believe I was suffering in constant pain. I wanted to scream: “I SWEAR I AM IN SO MUCH PAIN AND I NEED HELP! PLEASE BELIEVE ME!” Sometimes the things we cannot see are impossible to believe. With age, lessons, and wisdom I frankly do not care if anyone believes that I have chronic pain. I get frustrated at times with the people that love me and know my journey that sometimes seem to forget I am still fighting an every day battle. However, I am doing so well with my chronic pain management that it rarely ever gets to me. I spent so many years wanting to prove to people that I did have chronic pain and was not just seeking attention or whatever people may have thought. The energy I used worrying about what people thought and trying to prove to them that I truly had chronic pain even though the only physical scar still showing was under my long brown hair was very self destructive. Trying to prove to others that I was in pain only made the pain worse and wasted so much of my time.
My grandmother whom I called/call La La passed away when Kayci was just about eight months or so. She died peacefully at home with my dad, my daughter, and I in her bed with her. She was under hospice care and there were multiple nights we said goodbye to her because the nurses did not believe she would make it through the night. During each of those goodbyes there were many tears and many hugs and just a lot of sadness surrounding my La La. Each morning I awoke by three am, ran downstairs to see if she was still breathing. All my medical social worker skills went out the window once it came to the person I loved. Each morning that I came to her bed she was still breathing and I talked to her: most of the team with tears running down my face. The following day my daughter, my dad, and I were in bed with her watching Baby Einstein. Kayci was so young but her love of music had already begun. She was jumping all around La La’s bed and my dad and I were laughing. Kayci has been hysterical since she could sit up on her own. While Baby Mozart was playing and the three of us were giggling I looked down at my grandmother and realized she had stopped breathing. I know in my heart she waited until there was joy around her which that morning there was. She never did like a fuss over her.
Many years ago for Christmas, I made La La a stuffed monkey from Build a Bear. I dressed the monkey I had made in only boxers and she thought it was hysterical. She kept it in bed with her from that day forward. I am not sure if she slept with the monkey or not but it was always in her bed. From that Christmas forward I made La La a different Build a Bear but no other stuffed animal ever entered her bedroom, just the monkey in his boxers. After she passed it was one of the possessions of hers that I knew I wanted to keep. Months went by and I slowly forgot about the monkey as I was bombarded with so many toys and stuffed animals for Kayci. The stuffed monkey just got tossed in the mix of endless stuffed animals belonging to Kayci. About nine months ago my little girl began carrying the stuffed monkey everywhere and called her: Emmie. To this day she always has to know where Emmie is. This past Monday as I was getting ready to head out I looked down at Kayci and noticed she was holding Emmie. I said to her: “Is that Kayci’s Emmie?” She looked at me with such strong eyes and conviction and said: “No Mommy, La La’s Emmie.” For clarification I never talked to Kayci about the stuffed monkey being La La’s favorite thing or even associating Emmie to La La. I was stunned for a few seconds and had chills. I began talking to my grandmother, which I will do on occasion when I need someone to talk to: whether or not she hears me doesn’t matter. I just like to talk to her. I now am 100 percent sure La La is watching over us. After she passed, my husband and I bought her home and decided to make her wish come true and fill her home with babies and love. She always wanted me to raise my family in her home and my husband helped make that dream come true.
I told the story about Kayci, Emmie and La La to multiple people and I am sure many did not believe it was anything spectacular as I believe it is. Well, I know for a fact people do not believe she is around and there was a connection in that story because they flat out told me so. I do not care if anyone believes me just as I do not care if anyone believes I have chronic pain. Like I said, it is very hard for people to believe what they cannot see. Why does it matter if anyone believes me or has the same thoughts as I do? I know what I believe, I know I have chronic pain, and I know I will make my dreams come true. That is all that matters.
I know how frustrating it can be to have people doubt you have chronic pain but you are not alone and I believe each and every one of you. All that really matters is what you know to be true. Do not waste your energy on those who do not believe you no matter what your truth is. It truly is a waste of time, energy, and living your life to the fullest.