I got a phone call from the ssdi office right after breakfast one day. The caller was a government employee who relayed to me that my disability case was under review. Everything was suddenly spinning and yet moving in slow motion. I felt frozen in between. Was I going to lose my income? Would my husband have to work two jobs? Did I set off some kind of alarm with a social media post? Do they even monitor my stuff online? That entire day was one very long battle to hold back tears, with the reason changing hour to hour, emotion by emotion.
First I was just upset because the stupid ssdi employee ruined a nice coffee date I’d been enjoying with my husband. I had even styled my hair and applied makeup – on a Thursday. A THURSDAY.
I dreaded the next couple months. I knew how it worked: Weeks of appointment after appointment, every one with a doctor who’d poke, prod, and question me. “When was your last fall? Why didn’t you see your therapist last month? How often do you use your cane?” My mind started to spin with all of the overwhelming information I’d need to have ready. I honestly do not know how I spent the hours between that call and 2pm when we drove to pickup our sweet little girl from school. It’s like my mind sort of glazed over and any thoughts or responsibilities succumbed to stasis. After a quick trip to grab milk, we pulled back up at our home and my daughter begged to go across the street to her grandma’s house. Part of me was relieved because I could feel my emotions close to breaking open, but I immediately felt guilty for not wanting her around me. I hugged her bye, grabbed my bags and made it one step inside our front door before my emotion balloon exploded.
I really dread these type of reviews. They feel so very invasive.
It’s never really about the need to prove I’m still encased in disease-ridden body. I understand (ish) that I’m receiving financial support from the government and they have to ensure I’m not a fraudulent case. It’s not even that the powers that be required me to go see THEIR doctors because mine apparently don’t perform detailed enough exams to determine if I’m still broken enough to continue receiving a check. I had just seen three different doctors over the prior month. It’s the repetition of having to prove I’m broken enough to be considered useless and not an asset to society. Both of those reasons sound the same, but they’re not. I’m ok with my dire destiny. It’s the re-remembering and re-realizing every aspect of the things I can no longer physically accomplish. It’s the explaining why I voluntarily gave up my driver’s license. It’s the explaining brain fog and that it’s why I don’t remember the moments before my last car accident. Every intake questionnaire, every doctor. It’s the experiences of sitting in a patient room, gripping my cane to keep from crying while I listen to my husband respond so calmly respond to questions about my health – questions phrased by the doctor as if I’m not entirely mentally capable of articulating an acceptable answer. It’s the draining responsibility of reorganizing my family’s life to accommodate all of these mandatory, government scheduled appointments. It’s the explaining every appointment to my little girl with why she can’t come with me. It’s the feeling of missing her so, so much while I exist for hours in government funded medical office waiting rooms. It’s the very loud silence in those waiting rooms. Most uncomfortable of the whole circus though, isn’t the revolving door of remembering accomplishments. It’s not the loop of realizing loss, or the anger I feel at the unfairness of it or the many, many tears of grief that I ugly-cry over it all. All those things, though painful, are expected and I’ve learned to grit my teeth and power through. What is hard is watching my daughter see me broken. It’s so hard to try and build what I view as a strong mom figure she can look up to and adore when I’m always either at the doctor (because I still have to keep up with my regularly scheduled appointments), or too exhausted to do anything besides nap. I know my baby girl loves me. She’s the sweetest, most empathetic child on this planet. I just know that I could’ve been the fun, crazy and energetic mom but that was stolen before I ever had the chance. I wanted her to beg to wear my pretty heels but years ago I lost my balance ability and didn’t want to keep any of the beautiful four-inch reminders of my once sparkly self. I wanted to be a mom who takes my daughter on spontaneous shopping trips. I wanted to race her on rollerblades or bicycles. I wanted to be me with her.
I did pass my stupid ssdi review. It was a feeling of bittersweet relief when I opened that letter.
Creating Peace From the Pieces 