So, you're wondering what I’m about?
Truth is, I’m a forty something mom living in Miami. However, that’s not what defines me. I’m about helping people. That's why I am a board member to the Advocacy Network on Disabilities and The City of Coral Gables Disability Affairs board. I’m happiest when I’m helping others and that’s why I started Choice MD. You see, 21 years ago I started living with the complications of Multiple Sclerosis, an autoimmune disease of the central nervous system that can cause anything from blindness to paralysis and in the worse case scenario even death.
Think about that for just one minute, while all my friends were reveling in the fact that they were legal adults I was feeling alone and depressed, thinking my body was some sort of a ticking time bomb waiting to self destruct and leave me with life long complications. I know, that’s dark but it’s how I felt and the only reason I climbed out of those thoughts was because I reached out and then was helped out.
Happiness can be found in the darkest of times, if one only remembers to turn on the light.
The National Multiple Sclerosis Society, particularly the Lone Star Chapter, was my saving grace. I found a place where EVERYONE there understood what I was going through and EVERYTHING they did was for people like me. They were the warmest embrace during the loneliest of times, and that’s when it dawned on me. Mental health is an integral part of wellbeing and people need to connect to begin to “heal.”
Well, it's not exactly that simple.
After 21 years of living with MS and going through all the stages of grief I was determined to help people through the process. I know what you're thinking, how could it even be possible to live in denial or bargain with a disease? But, let me explain how these phases mask themselves in different ways.
For starters, it wasn’t denial in the sense that I didn’t believe I had the disease. I knew I had it, I was living with the complications. Denial in the sense that I denied myself the best care I deserved. In part because of financial reasons but also because I was in denial that the choices I made with my body had implications for where on the “spectrum of disability” I’d be living in.
This one was a no brainer. Of course I was angry. I was the healthiest person in my family, I ate all the right foods, I exercised daily and I lived a healthy lifestyle. Why did this happen to me? I was angry my life was filled with so much uncertainty at such a young age.
This was short-lived. I guess bargaining happened in my mind to maybe explain what I could have done for a different outcome. But I came up empty handed. I was a young, Good Samaritan who lived a healthy lifestyle. I didn’t deserve the diagnosis I was given.
Naturally, depression set in and it came with a vengeance. The saddest part is I can’t even tell you how long this stage lasted because everything became a blur. I just know that it lasted for many years.
FYI, depression also takes on many faces and while I wasn’t always sobbing uncontrollably into my pillow; I definitely felt like I was just floating through life trying to make it to the next day. At some point I got pretty good at masking this phase and I learned to smile without feeling any joy.
The final stage, acceptance, truly was a game changer. For years I had been attending support groups and programs for people living with MS and the more events I attended the less fear I had of the outcomes that could transpire. Simply put, it gave me hope and these meet-ups showed me the resilience of “my people.” I’d even go so far as to say that I came out better person because of this illness.