Family has always been an intriguing word for me. I have a logic based brain so I like labels and definitions. I like to be able to categorize everything. I grew up without a father, but my grandpa filled that role and I never lose sight of how blessed I am for having him in my life for 18 short years. I’m not sure how or when the idea formed in my head, but for as long as I can remember, my understanding of the word family is directly related to loyalty rather than DNA and/or traditional categories. My cousins are like sisters to me and in my 41 years, I’ve gathered a small collection of friends who have also been as special to me as a family member.
As I mentioned in previous posts, my diagnosis was fast-tracked. When it began, my friends were great, some connected me with resources, others offered emotional support, all of them were encouraging in their own way. Then I started medication and it was brutal, I felt like I had the worst case of the flu for a month straight. When going through this process, you assume that people will give you a little leeway. Now, I never expected my friends to give me a free pass to act like an asshole, but I did expect some consideration and understanding. Boy was I ignorant.
One of my oldest friends, a person who I considered to be my female soulmate, was the first to leave. She blasted me with ranting text messages over an innocently intended Facebook post. I explained that I had just finished an injection, I was not feeling well, and not up for an argument, I expressed my love for her and added that I would never do anything on purpose to cause her pain. I received a half dozen additional text messages that, among other things, called my loyalty into question (not an approach you want to take with me). Within 24 hours, she and several of her family members started blocking me on Facebook, I asked for an explanation, no response. That’s when I knew the true impact of this disease on my life. If people who have been there your entire life cannot put aside their personal (imaginary) drama to comfort you when you need it most (or at a minimum, stop themselves from arguing with you for a few days), you’re screwed. I need to be very clear, these are people that were part of my inner circle, their families were mine, and vice versa.
I mourned this loss, it was utterly devastating, I cried for days, I reached out to anyone and everyone, pleading with them to talk to her about how badly I was hurting, but nothing changed, we were over.
A few more followed, in smaller ways, they left me behind and moved on with their lives as if I was already dead and buried. If it were not for my husband, mother, and a few of the most amazing friends I could ask for, I would’ve felt completely alone.
I’m not a religious person, but I believe in a higher power. I believe that we have guardians on the other side, made up of the souls of people who were close to us in life. That being said, I’m pretty lucky, I’ve got my grandpa and grandma, my uncle who was like a father to me, and my dear friend “The Captain”. I believe that those souls are looking over us and actively placing people, resources, and situations in front of us that (if received or acted upon by us) impact our lives for the better. So, while I’ve lost people that I never thought I would, I’ve also gained people that I now believe where placed into my life for a reason. Add that to the friends and family who stuck by me during one of the most challenging times of my life, I feel pretty damn lucky.
I don’t pretend to know what the future holds; but at this stage, I have no intention of reconnecting with anyone who thought it appropriate to abandon me.
Status Update: New meds arrive next week, I will be starting them the first week of March, one of my medications was rejected by the insurance company, but my nueroligist office is handling the appeal for me (seriously I am very blessed with incredible resources).
That is all for this week, thanks for reading!