Since the beginning of my journey with Multiple System Atrophy I have been faced with making many decisions. First I needed to decide if I was going to fight or just sit back and wait for it to take my life. I had to decide what type of healthcare I wanted to receive. I had to take a good look at my bucket list and prioritize the items on it.
I’ve had to make decisions regarding medical procedures and which physicians I wanted to provide my care. I have had to make decisions on even little things like what foods to eat. Do I follow the doctor’s instructions and stay with soft foods, or try to eat normally and deal with the consequences of the struggle and pain I have trying to swallow normal food?
I made a choice to commit my life to God and rely on him to walk me through this. Like the poem about walking in the sand with two sets of footprints. When there is only one set, I know he is carrying me. I made my end of life decisions so Susan would not have to face those decisions. I decided to become a spokesperson for MSA and make my journey public so I could bring awareness to MSA and help promote research for a cure.
People make decisions or choices everyday and with every action there is a reaction. I have to weigh every decision I make regarding my disease before taking any action because it will now affect everyone around me. If I decide not to take a certain medication, there are side effects. If I take certain medications, there are side effects. If I meet someone new, and share the fact I have a terminal disease, I have to then deal with the questions and emotions of that person who is just learned a new fact about me.
I have been very open about my disease with everyone around me because at any time, they could, without notice, witness the horrible symptoms that plague those suffering with MSA. On the other hand, I have not completely disclosed my condition to those that don’t interact with me on a regular basis or live near me. I have not shared this journey with my Mother.
My mother is 83 years old. She lives in Florida. She appears in relatively good health and my brother lives with her. I see her every couple of years. The last time was Christmas 2009. She knows I have health problems, she does not know I am dying. She calls me almost daily, probably because Mom’s have that intuition that they know something is wrong even if their child doesn’t say anything. She knows I’ve had multiple surgeries. She knows I’ve lost a lot of weight. She does not know I have MSA or that I am under the care of Hospice.
I am going to visit her next week. It will be a surprise for her. I had made a decision early in my diagnosis that I was not going to tell her about my journey with MSA. I really saw no point in it. She is elderly and I didn’t want to put the strain on her that she was losing a son. I think I also thought she would pass on before me so she wouldn’t have to know. When I would tell people of my decision, there was mixed reactions. Some thought I should, others were not so sure.
A couple of weeks ago, about the time Hospice got involved I decided I needed to tell her. Let her know all the details of this disease. After all, I’m now in Hospice. There’s a good chance that she will outlive me. So I made the flight reservations. Susan and Angelina will go with me. I will need their moral support. She should know right? Or maybe I just need to see my Mom.
But, do I really want to cause her this pain? She lost a son about forty years ago. My brothers Robert, (10), Paul, (12) and I (8) were walking down Carmen Avenue going to the Carvel Ice Cream store when two cars started drag racing. Robert pushed me out of the way and took full impact of the car. He was drug over 200 feet underneath the car before it came to a stop. The driver got out of the car, took a look at what he had done, got in his car and sped away. He was never caught. You cannot imagine the pain my mother must have felt losing her son. Our family was never the same. I guess when a tragedy like this occurs, everyone plays the blame game. It is always someone’s fault. My family never accepted that it just happened and maybe no one, except the driver of that car was at fault.
Even when my Mother came for Christmas in 2009 there were pointed questions. Questions like, have they tested you for poisons? What medications are you on? Are you sure that’s what you’re being given? Have they checked your blood for toxins? Questions that appeared to make it Susan or Angelina’s fault I was sick.
So here we are again. That ugly truth monster has reared its head and I need to deal with it again. Do I or do I not tell my mother the truth? Do I tell her so she has the opportunity to do and say the things a mother needs to do or do I spare her the pain now and just let her get a phone call that I am gone?
You all have been so great and supportive and walking along with me on my journey. I would like some advice from you. What do you think I should do? If you have suffered or are suffering from a terminal disease, what did you do? How did you tell your loved ones? Did you decide not to tell them? Are you a family member that has someone that is dying? How did they tell you, or if they didn’t, are you glad or do you feel that you missed something by not knowing. Please share your experiences with me.
Please respond with your comments at the end of this article. Hollywood Republican has a place for you to respond. If you don’t want your response public, you may email me at Beenserved@aol.com.
We will be leaving on Wednesday, August 3rd. Please submit your responses before then. I am really torn on how to handle this situation and as always, ready to listen to your ideas and suggestions.