I was a completely different person before my HOD diagnosis. Let’s call it pre-HOD diagnosis transformation. Of course, I can only speak about my journey, but I am hopeful that my journey may be relatable to your journey. Before HOD, I was burning the candle at both ends AND in the middle. I was a successful businesswoman, working for a long-established local company. I was (and still am) a mom, a stepmom, a wife, a grandma.
Life Before HOD: The Struggle for Acceptance
But, I was also desperate for acceptance. I was a people pleaser who would often ignore my own needs to meet those of others around me. I would (figuratively) break my back to get the company I worked for and my boss to see me as an MVP and respect me as a high-quality employee. Back then, I was desperate to find a true purpose in my life. I knew that there had to be more than working so hard to make another person’s dream come true (my employer) and to make more and more money. Those ideals were not mine. Those values were not mine. Bending and breaking myself to fit into a mold that didn’t suit my soul was the biggest exercise in futility that I had ever submitted to.
Turning Point: The Colors After the Diagnosis
Then, everything changed. We can call this the beginning of my HOD diagnosis transformation. Slowly, things shifted. I shifted. It was as if I was seeing the world in black and white for all those years. I didn’t appreciate it at the time but my HOD diagnosis would paint the most beautiful colors into my black and white canvas. It took a lot of inner work and acceptance to be able to see the beauty in the colors. I was terrified. For a long time, I couldn’t talk about the diagnosis, my future, my health, or anything relating to HOD without falling apart. I couldn’t cry politely, either. These days I am haunted when I think of the poor folks who asked me benignly “How are you?”, and I would explode into the ugliest sobbing cry that they had ever witnessed.
That period is when most of my friends and family sloughed off and out of my life. I could hardly blame them. Who has the energy to deal with Debbie Downer all the time? Some tried to hang on but wouldn’t survive the second great sloughing. This happened when I decided that my remaining good years would not be filled with people who didn’t contribute to the relationship. This sounds harsh, and it was, but these were folks who had no real interest in me. They were around for the drama of my downfall. I decided that those folks would not get the privilege of witnessing my rebuild. I learned the most valuable lesson of all; I get to choose who is part of my life. In reality, I don’t owe anyone anything, and I can build my reality however I want. I kept my circle tight, and relationships that didn’t serve me and the other party were not relationships that I needed.
Embracing the Unknown: The Beauty in Trying
Next came the beauty in trying. Before all of this happened, I was terrified of trying anything new that I wasn’t positive that I would excel in. HOD has encouraged me to try painting, watercolors, and embroidery, and guesting on podcasts, and becoming vulnerable. Before HOD, I was afraid of basically everything unknown. I used to play like I was a brave cat, but I was just a dressed-up scaredy cat. I’ve never missed our quarterly ‘No Judgment Group Art Therapy’ sessions (put on by HODA), even though I get paralyzed with imposter syndrome before each meet-up. I lead virtual patient support groups now. Before I assumed that what I had to say was of little to no value, so I would just sit quietly. Well, not anymore. I always loved baking but would not even try certain recipes because I was afraid of it not being the best thing anyone had ever tasted. Now, I try, and I fail, but I also succeed sometimes too! Each experience is valuable to me, and I am always thankful for having the ability to read, understand, and follow directions. That is not a given in the neurodegenerative world, and I recognize that.
Self-Discovery: The Journey to Self-Acceptance
After that came self-acceptance in my HOD diagnosis transformation. This was a new concept. I always talked about self-acceptance, but couldn’t ‘walk the walk’ in the past. I remember ruining a vacation once because I was so upset and obsessed with what my boss thought of my performance. I’d turned the vacation into a discussion about why I wasn’t getting the accolades I believed I deserved. I analyzed everything in my job that just doesn’t matter now. Don’t like me? That’s just fine. I am not for everyone. I am often saddened by the time I wasted caring about what other people thought of me. I’ve come to understand that none of it mattered. The freedom I found in letting all that go was remarkable. Only now can I fully appreciate what carrying that weight around was doing to me.
Finally, I let go of perfectionism. Before HOD, I was rigid and scheduled. Dinner must be on the table at 5:45 every night. It would be home cooked, and healthy. Even though I worked more than full time, my house must be always clean. I must never call out sick, or be sick, or rest when I need it because that would be lazy. I must be the perfect wife/mother/daughter/employee and lose myself in those titles. Today, I am so happy and proud that I can make dinner four nights a week. If the laundry sits an extra day, oh well. As long as no one dies, then we are doing great! If I don’t feel up to cleaning, who cares? I am finally putting my health and my needs first.
Life-Altering Lessons: Becoming a Better Me Post-HOD Diagnosis Transformation
Getting a devastating diagnosis like HOD is life-altering. It’s not something that anyone would choose. However, HOD has made me become a better human. Post-HOD diagnosis, I honor myself and my needs. I have so much empathy for other people and their struggles now. I embrace the unknown and enjoy the little things like flowers, baby birds, beautiful sunrises, and rest. Vacations are beautiful new adventures, and not being connected to my work cell phone. I appreciate that I can sit in the uncomfortable grief with others, and don’t see disabled folk and feel sorry for them. Don’t get me wrong, I am more than a few years into this, and it has not been an easy journey. My HOD diagnosis transformation has been a valuable journey that I don’t regret.
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