Dear Readers,
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.
Frank and Angelina
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.
Thanks, Frank
Facebook
Twitter
Frank,
After 15 yrs of living and working in SoCal, and of feeling so very alone as a conservative swimming in the debilitating morass of liberalism that is the entertainment industry, I was very pleasantly surprised to run across a few sites online whose owners were defiantly outted Republicans and/or conservatives. Sites that, to a great extent, echoed my sentiments and personal values.
But it is this poignantly tragic aspect of of your life’s journey that touches me most deeply, and I want to let you know that your writing…on all levels and subjects…have no doubt had and will continue to have a reach and impact far beyond what you might immediately see. My thoughts and prayers are with you and your family. Not just the hurried, mumbled utterings of busy people to a god they may or may not actually believe in. But I pledge to take the time to truly pray. I make no claims that I possess any insights into what will or won’t occur as a result, nor do I offer any hope that my prayers will alter the course of the things that now shape your life. My only hope in doing so is that you can know that you are not entirely alone in your struggle. There are friends, family, and even complete strangers who look at the humanity of this situation and join you in asking for strength and grace under the pressures of this condition and for being thankful for a life lived well.
Sincerely,
BC
Mr. Carr,
I am only hoping that the stories of my life are inspirational to at least one person. It warms my heart to know that there are people out there in this world that care about others and will take one moment out of their day to think about others.
Thank you for being one of those that care.
Frank
Frank I feel for you. Back in 2004 I was diagnosed with breast cancer and told to go home and get my affairs in order. Well I was devastated. All I could think of was my kids, what would they do without me at 20 &21 yrs old. Then I just wanted my mom to just hold me and tell me everything would be alright. That was almost 8yrs ago. I think if I was in your shoes I would tell your mother because there’s nothing like a mother’s love. She may feel as if there is alot left unsaid that she didn’t get the chance to just hold you and tell you how much she loves you, and to just be there for you. After all she gave you life, let her know how much you appreciate her and love her. Just share that natural bond you have cherish the moment, for we all never know when our time is up. You are an amazing person and I enjoy taking this journey with you. Good luck with however you decide to do it, I’ll be thinking of you and your family. God bless you !!!!
Frank,
I think your mother needs to know the truth so she has the opportunity to say and do what she needs to in order to accept it, especially if she is reasonably healthy and able to understand. In my opinion, it would be an awful shock if you left it to be a phone call after the fact. Maybe putting youself in her position might help–what if it were your child, would you want to know? You have spared her years of worry, and only you can know in your heart what you really want to do. I’m just thinking how I might handle it, but who really knows unless they’ve walked in your shoes? Good luck with your decision, I hope your visit goes well whatever you decide.
Frank. Thank you for sharing your heroic battle with us. My comment is short and sweet. Yes. Tell your mother. if your child had a terminal condition, wouldn’t you prefer to know? She is your mother and I am sure it will be sad for her, but she already suspects something is wrong. Trust her to be able to handle this also. Otherwise she will feel left out later. Pain now, when she can give you all her love…. or pain later…. You will know what to do when you see her. God bless.
Frank,
I am only 49, so this was extremely hard for family. My mother died unexpectedly in March, but she knew about my illness, she refused to deal with it, but that’s ok, it was her choice. I have veen brutally honest, and me and my children are even closer, if that’s powwible. My Dad died 16 yrs.ago, if he knew this would have killed him. I need and want my parents more than ever.
Hey Frank and Susan, this Donna from the Yeehaw shows. I myself have lost both parents in the last 4 years. But in my heart I think you should tell your mother. She is stronger than you think. I feel that way because I am a mother also. Imagine all the wonderful memories you can share and let her just talk and talk about the baby, child, teenager and the man you have become. I think this would help you and her get through this. She carried you for 9 months and yes all parents want to go before there children do, it doesn’t always happen that way. You two can bond in ways you never have before and try to put yourself in her shoes, if one of your children left this world without telling you they were sick and you never got to tell them how you truly felt about everything about them. She will be devastated at first, of course, but in the end, you will walk away feel so good about all the things you never knew about yourself. She has a wonderful son to be proud of and a wonderful daughter-in-law who has stuck with you through everything. Please tell her how you felt as you grew up, all your favorite dishes she made, funny memories, even sad ones, this will be your last chance to tell your mom everything and she will dearly hold all the memories close to her heart till she meets you again in Heaven.
I love you both very much, and I am amazed of the strength you have given to others who may/or may not be dealing with the same thing. I know for my self you have made me a stronger person watching you and Susan deal with this and take the wonderful trips, just to enjoy life. I hope this helps and I still continue to pray for a miracle for you.
Your friend always and sister in Christ,
Donna Berry
Dear Frank,
and you can beat this thing..Well here we are almost 6 years later and she still kind of scolds him for not doing his PT, and what are the doctors saying:) So I guess you could take that as her thinking if he didn’t get well it was his fault, but we did not take it that way at all. It was just a mother with her heart breaking watching her son deter-ate and she could not do a thing about it so she said what was the most helpful things she knew of. Also we are a family of great faith and his mother is a rock, and she always hugged him and said I’m praying for you. NOW THAT IS WHAT HE NEEDS the most… So tell your mom and hug her like you would want your son to hug you if he had to bring such news to you..That’s my thoughts, hope it helps…God bless you and family.
As I think about when Larry told his mom, she is ninety now, and that was in 2005. She just said do what the doctors tell you, (which as you know the doctors can’t tell you anything), and do you PT,
Lana, Caregiver of Larry with MSA
The only experience from which I can draw is our own MSA journey with my mother-in-law. From the first moment of the diagnosis, I researched and shared the information with my husband. I also shared the info with my brother-in-law & father-in-law. They were not ready to accept the prognosis. When the end came for Mom, my husband saw it was coming and was prepared. His Dad and brother were not–completely blindsided by her passing. Losing her precious son is not going to be any easier either way. This is completely your decision, but since you asked…I, as a Mom, would want to know. God bless you on your journey. I pray you get your answers.
Frank nothing is easy when there is this kinda of adversity in your life. There are many positive remarks in the notes above. This journey don’t every get any easier when it comes to choices and decisions. Pray and pray somemore and then go with what your heart tells you. I would guess that Susan would be the best person to listen too and help you with this decision. We will pray for you, your trip and in giving you the wisdom to do what’s best. James 1:5-7
Dear Frank,
You are precious in His sight. I appreciate you and Susan so much. Yes, I agree with everyone else. You need to tell your mom. She needs to know. It would be hard to know one of my children are dying but I want to be there for them as much as I can. Maybe I wouldn’t be able to be there for them physically but I could be there emotionally and prayerfully.
We haven’t found ourselves in your position Frank, but I would tell her. Just because it seems to be the right thing to do. You and your family are always in our thoughts and prayers.
I think you should do whatever your heart tells you to do. We can make the trip and you tell her, or we can go just to visit and it’ll be our little secret. However, if you do decide to tell her, you know I don’t like to show that I’m upset or hurting, or ready to cry, so let me know when you’ve come to that decision and I’ll go lay out by Grandma’s pool!
But I will stand by your side and be there for you. You know that 
I love you, daddy!
I FEEL YOUR MOTHER NEEDS TO KNOW, ESPECIALLY IF SHE IS STILL ALERT ENOUGH TO UNDERSTAND. SHE WILL UNDOUBTEDLY BE UPSET WHEN SHE HEARS THE NEWS, BUT SHE WILL HAVE THE OPPORTUNITY TO SAY HER GOODBYES DURING YOUR VISIT, SOMETHING SHE WILL NEED FOR FUTURE CLOSURE.NOT HAVING THE CHANCE TO SAY HER FINAL GOODBYES TO YOU, WILL ONLY LEAVE HER WITH REGRETS & GUILTY FEELINGS. I HAVE BEEN A NURSE FOR 31 YEARS, & HAVE SEEN MANY SIMILAR SITUATIONS. IT IS THE RIGHT CHOICE.DON’T HESITATE. GOD BLESS YOU ON YOUR JOURNEY. ALWAYS, CLAUDETTE MENZ : )
Frank,
What a situation to be faced with. As a mother I would want to know. follow you heart Frank and God will sustain you and give you the words to say. You have allowed us your church family to share your journey with you. You have inspired us with your writings and give us knowledge we would otherwise missed. We love you and you are in our prayers daily.
Bob & Kay
Frank,
i believe with all my heart that you should let your mother know. My parents were taken from me so suddenly that I had no time to talk with them. No one will know your mom’s reaction. The only thing I can say is I wish that I had one more minute to talk with my parents. Do not go into the night easily – fight the good fight. I was there a few weeks ago and saw how you, with Susan’s help, courageously fought back. for as long as you can, spit in deaths eye.
dave criner
Frankie,
Like so many times before now, YOU have taken the brunt of the weight that this terrible disease carries with it. I respect you for that immensely. I am in awe of your courage and compassion for others. And is a very small way (which doesn’t compare to your journey), I can relate to you. When I was in Iraq in the early days of the war, and being a medic, I saw so much. I never told my wife, daughters, or mother about the bombings, the shootings, the sniper attacks, the mangled bodies I saw come into the ER, or the fear that every person there had inside them (whether they admitted it or not). I never told them about the times I truly thought I would die there and not make it home as I promised I would. I never told them about the hundreds of times I went over in my head my memories of them, and how being in that situation made me realize just how much I loved them. But once I made it home, I started to open up and share some of my experiences with them. It has been a tremendous help to my inner peace, and with my quality of life. Now back to you. You have been the cushion for all your friends regarding this disease, as well as the educator of it. And I am proud of you for that. But it is time for you to be a cushion for your mother, too. In my honest opinion Frank, you need to be totally truthful with your mother. Why do I feel this way? Well, the parent comes out in me. She held you when you were a little baby and took good care of you. When the tragedy of your brother’s death happened, I am sure she hugged you more than one time and told you it would be ok, and that she loved you. When you fell down and skinned your knee (as we all have at one time or another), I am sure she bandaged you up and told you everything would be just fine. Well, she might not be able to bandage you up this time, but she can still offer a mother’s love in this time of your life. She can still reach out and hug her son and tell him everything will be ok. Mothers have a way of making everyone feel that way. I think if she does outlive you and hears about all that you went through, it might be hard for her to understand why you didn’t come to her and let her be a part of your miraculous journey. After all, her son has touched and changed more lives during the past few years than most people are able to do in an entire lifetime. She deserves to be proud of your accomplishments, ALL OF THEM, and especially the ones since learning of MSA. You are an incredible life, Frank, and somewhere along your lifelong journey, your mama must have had some part for the wonderful man you have turned out to be. You want my advice? Say everything you ever wanted to say to your mom now, and level with her. She will be ok. And part of that great weight that you have carried around for so long now will be lifted.
I am so grateful that you consider me a friend and would ask me (all of us) for advice.
Scott
Dear Frank,
I know how hard this is but I believe you should tell her. I feel she should know and it will also help her with the mourning process when the time comes, I believe it is not fair to leave this burden on your family. Your mother will feel as if everyone knew but her and she will be angry. She will not see it as you trying to protect her, and this way it will give her a chance to say all those things that she may have been wanting to say. Also your mom will need to do those things moms do, like hold her boy!
Hope this helps! Stay strong.
Brenda
Hi Frank,
It was an honor to meet you yesterday. I was one of the firefighters that you talked to outside of the courtroom. I enjoyed our conversation and wish you the best during this time in your life. I will keep you and your family in my prayers.
Your Brother in Christ
Rob
Dear Frank,
I began following your story after reading an article about you in the newspaper several months ago. It caught my interest because my step father was diagnosed with this same rare disease several years back. Following your stories about your fight with MSA has given me insight into his struggle as well. Your writings have been a way for me to find out more about what to expect for him and how I and my sister can better assist with his care. I have thought about you, your wife and family often and have kept you in my prayers.
As I now read about your current struggle with telling your mother about your situation I find myself reflecting back on losing my mother 5 years ago. My sisters and I were called to the hospital where the doctor was running tests to determine what was causing my mother’s symptoms. He returned to tell us she had pancreatic cancer. We had 5 short weeks with her before she was gone but it was 5 weeks that I was very thankful for. We were able to talk about things that were important to us and say the things to each other that allowed us to feel a certain sense of peace. I thank God everyday for those 5 weeks with her. As hard as it was to lose her in such a short period of time… that time was a gift!
I hope you chose to give your mother the same gift!
I send you and your family much love and prayers!
Jayne
[...] Bridge as the “shot heard “round the world”. Those who live with MSA, if one cares to visit “MSA Decisions: A Visit To Mom”, “My Visit With Mom”, “One More Fourth of July”, “MSA and the Cleveland Clinic”, “A [...]
Hi Frank: I came across your website while preparing for a trip to Florida to spend time with my brother, who has MSA, and is noticeably declining these past 6 months. I’m not sure of your condition as of today (4/1/12) but am wondering if you have a feeding tube or what decisions you have made regarding end of life. This is so difficult to ask and I hope you are not offended by my doing so. I”m having a hard time finding advice to present to my sister-in-law and brother. Hoping that you are still writing and reaching out to others. Thanks for reading this, Dale