You might think our loved ones would be the first and the best of our supporters in this journey. I am blessed, truly blessed. I have a husband who became my biggest supporter and advocate. He gets just how difficult life has become for me. Maybe because he actually sees me as opposed to a phone conversation where I say the usual, “Oh, I’m okay”! Then quickly turn it around with, “How are you”? The caregiver in me always comes out, as it’s part of me. When I came down with Labrythnitis, Mike stepped up to his new challenges and there were many! We had a ‘traditional’ marriage prior to this unwelcome and uninvited monster bursting into our lives. He didn’t complain how our life was before life forced him to learn the definition of ‘Vestibular Disorders’. I was working. He was working. And I did everything else, you know, traditional. Waa Waa Waa…! I acknowledge I’m lucky, as not everyone has this kind of support or that kind of husband! I think my adult children get it and I’m educating my two grandsons. The oldest one recently said, “But Memaw, I remember you jumping on the trampoline…”, he was referring to the Sensory Room at my work. That was in 2007 or 2008. Childrens’ brains are sponges! So he does remember me as a fun person, which I was.
I just want to be understood and accepted, like the old Gospel song, ‘Just as I am…’ Isn’t that a universal wish? To be accepted? Just as we are…now. I will be the first to say, ‘I wear my heart on my sleeve‘. When I love someone or something, I’m all in and there will be no doubt of my feelings. A more truthful statement might be, ‘I wear my emotions on my sleeve’. Otherwise, I’d wouldn’t feel so hurt by loved ones not understanding what I’m going through. I have a belief system I suppose, ‘Well if they really loved me, they’d get it’. Am I alone in my beliefs? Am I still lacking maturity at age 60 (and why do I even care)? Do I expect too much of them? Just how do I appear to them? Do they not see my challenges or do they think I’m faking this nightmare? Are they ignoring me because of my Vestibular Disorder? Have I missed too many family occasions or hurt someone unintentionally? Do they think I want to be like this? Ooooo! I’m getting myself mad now because my truth is, hell NO, I don’t want this! Who would? I am dealing with what I’ve been given. It’s not fair. I’ve learned that lesson with all the other life ‘events’ I’ve had thrown into my lap.
One of my siblings recently found my blog through Linkedin. “Gosh Margaret, I had no idea you were still going through all that, I’m so sorry”. On one hand, I felt a little frustrated, on the other hand, I felt heard. The later feeling meant more…Another sibling told me, “Margaret, when are you going to realize your life is God’s shit screen”? Oh my God! What does that even mean? These are their made up words. Please don’t be offended, I carry enough for all of us. I just sat there, mouth gaping, eyes glaring, and speechless. Yes, those stupid words cut me deeper than a sword and I am having such difficulty forgetting them. I know I should focus on forgiveness, I suppose. The truth is, Mike and I have had a life unlike anyone else’s. We’ve had the highest of highs and the lowest of lows. In 43 years of marriage, we have started over 4 times due to unforeseen, unwelcome and uninvited life events. My siblings have not experienced such events and I hope they never will. We don’t need to be reminded how tragic our lives have been by anyone, much less a loved one. For my personal emotional health, I’ve had to turn it over to my higher power. I’ve let the painful (stupid) comments go, kind of…I believe there are such things as ‘toxic’ relationships. For our own health, for us to get better (whatever degree that turns out to be), we cannot be in such relationships. They are called this for a very valid reason. It will poison you. It will deplete you of energy you need for other things. They will make you cry. A toxic relationship is unhealthy. Period.
I have always considered myself an Optimist, but this Disorder has, bit by bit, worn me down. Not worn down as in gone. Worn down as a rock does over time with the constant flow of water. Drip by drip, over time, eroding it away, until one day, it reveals a hole. The rock remains strong, yet is now allowing the water to flow through it. This is the true meaning of ‘go with the flow’…If a rock can change over time, to just ‘go with the flow’, so can I. So can you!