Sometimes I stare at this blank page and I really know what I want to say. Other times I really don’t have a clue. There are times I know what I want to say but I am to scared to say it. I fear that I might not write it properly and it would be misunderstood. This might be one of those blogs. Let me say right away I am not depressed. I am not suicidal. I am not trying to say I am ready for my life to end. I have things that I would very much like to see in my life. However I watched a heart-wrenching series on Showtime called Life and Death. It was a documentary series on various people who were diagnosed with life ending diseases. It showed some amazing people accepting their circumstances with grace and bravery. I sat here watching this series knowing I have a chronic illness that sucks, but I am living. There are so many times people comment on me being so brave and strong. The truth is I’m not. Being brave or strong, with a smile, is just a really good mask I put on each day.
I cried throughout the whole series on SHO. I cried partly for the family that surrounded the ones that passed. I cried as I watched how death could be calm as well as completely the opposite. However as I watched I understood the relief of both the patient and the care givers. There was a part of me that craved that relief too. Wow, that was a statement. I am not going to get any better. I would love for their to be a cure for multiple sclerosis. If there is one in my lifetime, I think I might be to progressed in the disease to be helped. I’m about to be 50. My body is going to start getting older on top of having multiple sclerosis. My life, which is already difficult, will continue to get more and more challenging.
I am happy to be alive so again please don’t misunderstand my point. That being the relief of the suffering whenever that time does eventually come. Not just my relief, my family. The constant worrying. Later in life it might be the concern over my care from aides and the right people showing up. In my family I am always in the back of everyone’s mind because of worry and fear. I can imagine that one day to not have that worry has to take so much pressure off of them. Causing that constant worry is another thing I carry with me. I think I carry it in guilt. I feel guilty causing so much worry to everyone. I live with that feeling daily as well as MS.
That is why I had such a profound reaction to this series. I watched these people take their last breath and I felt relief for them. I felt relief for me. I will continue to put on my mask of Bravery and strength for as long as I possibly can. I hope to live for many many many more years. I’d like not only see my daughter get married but I’d love to see my future grandkids get married. Having multiple sclerosis f@cking sucks.