Fighting For Disability Benefits (Part 3): The Decision
If you haven't already, check out Part 1 and Part 2 of this series. I knew the letter was in the mailbox before I even opened it. I could feel it. And I also knew before I ripped it open that the decision had been in my favor.
Social Security determined that although the myeloma had improved, I still met the eligibility criteria for disability since I experienced too many side effects from the maintenance chemotherapy to be gainfully employed.
I didn’t jump up and down or cry or even pop open a bottle of champagne. For the first time in a while, I simply closed my eyes and felt loved. So many people stood up for me when I was having trouble standing up for myself. My doctors wrote detailed letters, my caregiver friend gave his testimony, and the Social Security officers I had gotten to know truly listened with kindness and respect. Family and friends supported me all along and encouraged me to fight what we all knew was a wrong decision.
The other side of victory
But like any fight, this victory is a double-edged sword. I would never choose to be on disability at 50. What I really want is to feel good and live life actively and productively again. I miss my students’ eye rolls in geometry and socializing with my co-workers. I miss feeling like a part of a tribe that had nothing to do with cancer.
Just a few years ago, I enjoyed running for miles, shoveling snow, and mowing the lawn. I was planning to run a half-marathon, travel, and fall in love again. Where is that girl? The more time that passes, the more I feel like I’m losing sight of her.
Lessons I have learned
As unpleasant as this process has been, I have learned some major life lessons. The main one is to be more honest and open with my doctors. I have struggled with the shame of not doing as well as they or I had expected. Always a high achiever, I wanted to be the all-star cancer patient.
I have also been uncomfortable talking about things like depression, anxiety, and the dreaded diarrhea. For years, I have downplayed my symptoms and minimized how much they have affected me both physically and emotionally. I hadn’t realized how much of a toll it had really taken until the day of my hearing.
I was raised not to complain, so I must understand that explaining isn’t complaining. By acknowledging my symptoms and my feelings about them, I can begin an authentic healing process of body, mind, and soul. I had gotten in a pattern of denial, thinking that if I didn’t acknowledge the bad things that somehow they would just go away.
Moving forward into acceptance
These past six months have been among the most difficult since my diagnosis. The review process has brought up familiar feelings of victimization and fear of survival, much like the diagnosis itself. I have had to acknowledge that there are things outside of my control. For much of my life, I could search hard enough to find answers and work hard enough to fix almost anything. I need to accept that there will be things I may not be able to control or change. Let go and let God, people say. I believe that with my brain, but I have not believed it with my heart. I also need to trust that people, at their very core, are good and want to help.
So now I get some time to breathe and focus on rest, recovery, and healing. During my last session with my therapist, she mentioned something called radical acceptance. I don’t know exactly what it involves yet, but I look forward to diving in. For now, I can accept that as much as I didn’t want to fight for disability benefits, I have learned so many things that I may never have otherwise. The stress I have experienced through this process has given birth to an equally intense desire for clarity, inner peace, and acceptance.
Ironically, I realized that it wasn’t really Social Security I was fighting; it was me.
What type of blood cancer are you or your loved one diagnosed with?