MAKING MEANING WITH MS

Featured in Healing MS, Summer 2017

Seven years ago when I was diagnosed with MS I never realized how much my life would change. I convinced myself that I had been misdiagnosed and that I did not have MS. My denial was not without justification, since I was asymptomatic and would not begin a medication regimen for 6 months after I was diagnosed. This denial lasted for 3 years, when my first exacerbation slapped me in the face with reality and I finally began my journey of accepting and living with MS.

As with all journeys, who you choose to bring along determines the success of the mission. My team included; my family, especially my wife, my friends and the members of the IMSMP. These would be the people I would rely on to help me transition from my normal life that I was used to, to the life that awaited me with MS my, “new normal.” As depression began to take over my life, I decided I needed to seek out professional help. I made an important call to the social work department at the IMSMP and scheduled my first appointment with Yadira LaMazza. My conversations with Yadira helped my reality journey take form. We discussed being diagnosed with MS and the emotions that surrounded my diagnosis, my denial and my resistance to accepting the changes that were taking place in my body and mind. Yadira not only helped with the emotional component of my life, but she also guided me to seek out assistance with the physical challenges and suggested I start physical therapy (PT), the next stop on my journey.

One of the biggest challenges I faced was the physical component. From getting out of bed to getting dressed and doing my own hair, these simple tasks became my greatest challenges which caused me the largest amount of frustration.

Dr. Kanter's knowledge of PT and the needs of MS patients was a great help to me. We not only worked on the challenges I was having, but he always sent me home with exercises that have become part of my daily routine. With his help, I found a new love for PT. It is extremely beneficial in helping me overcome my daily physical challenges.

I have been fortunate in my life to be surrounded by a loving family and amazing friends that have always been there during all my endeavors. It was difficult to tell them about my MS because I was the protector, the comedian, and at times, caregiver. The last thing I wanted was to let them see me suffer but in reality, I needed to let them in so that they could give me love, strength and a reason to live. As I became comfortable with my MS, they began to realize that I was still me. This journey would never be complete without them.

According to Webster’s dictionary a, “caregiver,” is a person who cares for someone who is sick or disabled. What this definition does not tell us is that a caregiver usually puts their life aside in order to provide someone with love and assistance. My caregiver is my biggest cheerleader, she is the one that guides me toward clarity and is the one that has never turned her back on me from the day I was diagnosed. She attends all my appointments, all my infusions, and e-mails doctors. She advocates for me on a daily basis. She is always trying to help me understand my, “new normal.” This person is my wife. Everyone needs a caregiver and usually, that falls on the shoulders of our spouse, children, and parents, but through our journey, we must remember that they too are going through this and that some days are just as difficult for them as they are for us.

Well, this is my journey, I call it my, “new normal.” It is my life with MS. It has taught me that no matter how hard things get having the proper support in place will allow you to live life to its fullest. This journey is never ending and I hope the team players I have chosen will continue to play their roles and that the new members I incorporate will continue to help me battle new levels of living with MS.