Telling the Family

“We can claim our unique journey as God’s way to mold our hearts to greater conformity to Christ. The cross, the primary symbol of our faith, invites us to see grace where there is pain; to see resurrection where there is death.” — Henri Nouwen
 
It is interesting to see how people react so differently to the same news. My wife has decided that she will be strong for me and has not really cried in front of me. My mom cried a few tears but is doing the same. My brother-in-law is the typical strong latino male who believes that all men should suck it up and take life’s tragedies as men. He did share one of his many thoughts, which is one I already know intellectually but haven’t accepted emotionally: that God has given everyone a purpose in this life and I have to find out what mine with this newly discovered defected HD gene.
I truly believe that God has revealed this to me at this time of my life so that we can journey together and He can prepare me to meet my Savior. And more importantly give me the peace, and even rejoicing that I need to, so that I can empathize with those who suffer and offer my journey as a comfort to them that they are not alone. It will also help me in my grieving and healing process. I want to be at a place of my life where I can find peace and ultimately hope. I think of Paul’s words:

“Do not be anxious about anything. Instead in every situation, through prayer and petition with thanksgiving, tell your requests of God. And the peace of God that surpasses will guard your hearts and minds in Christ Jesus.” — Philip 4:6-7

I don’t want to be anxious but I have seen where HD took my uncle and my father and I am worried because I don’t want to go down that same road nor do I want my family to see me suffer. I want to have the peace of God that surpasses all understanding but it’s difficult when my heart is anxious because it knows that I will probably be dead in 20 years and may not even have the capacity to walk, talk or worst of all think, in about 10.

Now I think about the stupid things I shouldn’t have done in my life thinking I was going to live to be 75 or 80. I would definitely not have made certain bad choices that probably didn’t help this slow down this process. And after knowing about my own father’s illness, should have prepared myself financially so that my last years would have been more secure. Of course, none of this makes any difference now and it is certainly not going to help me to feel guilty about things I can not change.

Back to the family. As we sat around the dinner table, and watched everyone’s reaction, I immediately began to get the sensation that they were looking at me differently. I had been the source of strength and fortitude for them for so many years and now they were going to start leaving me aside on certain things so that I would not be “stressed out.” I do not want that to happen. I need to be involved in the day-to-day decisions so that I can have a sense of accomplishment. I will need routines that will help my mind stay focused. I am feeling very good about writing this journal and about leaving a legacy behind. In fact, I have been thinking about recording some DVDs with an interview and some pictures of the journey. It will be a long and painful journey but it would helpful to me. I was also thinking about doing my own website with pictures and sharing my experiences on a day-to-day basis so that others can be connected. This way if I get to the point that I can not talk, I know I can still write.

I just don’t want to be treated as an invalid or disabled. I have not gotten to that point, and in fact, I am pretty far away from it.

I love what Philip Yancey says about prayer being “a wrestling match with God.” He reminded me how Abraham negotiated the salvation of Sodom and Gomorrah. How Moses negotiated for Israelites. How Job, with an honesty rarely seen, says, “What would we gain by praying to him (God)?” Or how David cries out, “I am worn out calling for help; my throat is parched. My eyes fail, looking for my God.” How many of the promises of the Scriptures remain unfulfilled and that mercy and justice do not rule the earth. How Jesus Himself wrestled with God in the Garden of Gethsemane, asking that if there was any other way to save mankind to please reveal it to Him. In fact, many of the prophets were constantly trying to “change God’s will” rather than conform to it. He quotes Abraham Heschel, when he talks about the protests:

“The refusal to accept the harshness of God’s way in the name of His love was an authentic from of prayer. Indeed, the ancient prophets of Israel were not in the habit of consenting to God’s harsh judgment and did not simply nod saying, ‘Thy will be done.’ They often challenged him, as if to say, ‘Thy will be changed.’ Man should never capitulate, even to the Lord.” — Prayer: Does it really Matter?, pg 96.

I read this I am comforted. Comforted in knowing that I am not the only who has had a wrestling match with God. Knowing that I am not the only one who did not quietly accept his condition without some fight. That is true prayer.

I have told my uncle who is a psychiatrist and he was such an encouragement. He insisted that I continue in my job until the symptoms become too obvious where I can not function. He says that I should find the inner strength to keep my emotions in check and not feel sorry for myself nor make any excuses for my actions or misjudgments. That I should use this job to become a better person and that stress should not be avoided but managed properly. That by sitting around doing nothing, I am actually going to be more depressed. And he that will never patronize me or talk down to me and that I should be condescending to myself or let anybody else be that way to me. And he so right! I feel so much better!

My wife and I discussed whether it would be a good idea to share with the children all the information concerning their choice to be tested and whether or not to tell them about invitro fertilization options for their children. According the HD team, the affected HD gene can be removed and then plant the fertilized egg back in the womb. I believe that the children should know about my condition and tell them about their options. She believes that we should not stress the children out about their future. So we agreed to call them and see how they take the news and they are doing well, then we share their options about testing.

My 18 son took it well. And he received the information about the invitro as very good. He was concerned about my wife because he knew she would be affected. But she assured him that she would be ok. My 20 year old daughter was alright as well. She said that she wasn’t going to worry about the disease because she believed the end of the world would come before that. I don’t believe neither has realized how serious this could be but I don’t want them to be anxious. I want us to have the same relationship as always. And I hope they take the time later on to research the illness and make some decisions themselves. For now, I left this on a very upbeat note and asked them not to treat me different or patronize me. They both agreed. My wife was surprised at how well they handled it. I wasn’t. I trusted in the way we brought them up: to be strong, independent, and above all to have a relationship with God. Now all those seeds we’ve planted over the years are finally beginning to produce some fruit. Of course, they’re human and make mistakes like most teenagers do but they are good kids.

I feel a little more inner strength and peace in knowing that God is going to be with all of us in this terrible tragedy. Since I have read about and taught people about how to deal with our losses, I kept telling myself that I would be prepared for any kind of tragedy that would come my way. But I was completely wrong. When it happened to me, all my training went out the window. It was like being thrown off balance. My CPE Supervisor once said to us in group that he intentionally threw in “Un-Christian” words and comments just to throw us off balance because good pastoral care meant being aware of how it affects us and making the necessary adjustments to continue providing good care for our patients. Those teaching moments have given me the tools to be aware of my emotions and to keep them at bay. Now those emotions are going to become even more difficult to keep at bay because of my own condition. But that’s what being a hospital chaplain is all about. It will also teach me to do the same with my own family. I have to be aware of my emotions and to keep at bay and continue to provide the strength they have looked for in me in the past. That will be the struggle.

Prayer

“I have told my family about this and now I need your strength to get me through each and every day. Show me how to deal with it and how to deal with my loved ones so that they can be strengthen as well. Amen.”

 

 

The Day After the Results

“The hardships we endure require more than words, of course, even spiritual words. Eloquent phrases can not soothe our deep pain. But we do find something to lead and guide us through. We hear an invitation to allow mourning to become a place of healing, and our sadness a way through pain to dancing.” — Henri Nouwen, “Turn My Mourning Into Dancing,” pg. xv.
 
It wasn’t until the day after alone at home that I began to cry, sobbing cry. “Why oh God is this happening to me? Why me? This hurts too much! All of sudden, life as I know it is over. Why? A part of me is gone. Why? My future without HD is gone. Why? Why me?”
 
The emotional pain and the hopelessness was too much. I began to think about other options: suicide. “God, I cannot go through with this!! I cannot go down that road of a long drawn out death! I can’t do it! Just let me end my life now!” Death is death whether it’s drawn out over decades or whether it’s sudden: like suicide. It’s still death! So I was arguing with God about the time and the place and who would pull the trigger. “I don’t think I can do this! I don’t want to do this! I don’t want my family to suffer through this! Kill me quickly! Find a different way!”
 
This was the worst day of my life. There is no other way to describe it. The despair is overwhelming. The clouds are so dark I can’t see anything in the horizon. The sun is gone. There is no hope. There is no sunshine. All hopes and dreams of seeing my grandchildren grow up are gone. All plans of retiring like other normal people is gone (I was going to learn how to play golf.) If I’m lucky I’ll barely make 68 and I’ll be 48 in June. That’s only 20 years from now. In 20 years my life will be over, if not earlier. And what’s so crazy about the whole thing is I am in the best shape of my life! I have been working out at the gym and have lost 30 lbs and weigh 177. I do 30 minutes of cardio and workout with the weights for another 30 minutes. In fact, the gym has become my therapy for when I need to time to think and reflect. I leave feeling great. It’s one routine I plan on keeping.
 
I visited my normal doctor and my cholesterol and triglycerides were a little high but all my other blood work was normal. My prostate was normal. Everything is normal. I was planning for a long and healthy retirement. Now, all that was changing.
 
I can’t describe the grief I am going through. It is terrible. My mind tells me that I have to be strong for my family. It tells me that I have to show them that I can do this with dignity. It tells me that I have to suck it up and take it like a man. It tells me not to feel sorry for myself.
 
But my emotions are telling me something different. My feelings of hopelessness and despair tell me that there are no bright tomorrows. My emotions just fell apart, the tears of sadness just came and there was no stopping them. When my wife arrived she could see my eyes swollen and could tell that I was not having a good day. I wanted to go over to my sister’s home and tell her but she insisted we stay home and relax for the rest of the evening. No one knows except my mother, my wife and one of my best friends, whom I have considered as a father all these years. My siblings and my children do not know. I will be sharing it with my siblings this weekend. And I am praying about how I am going to share it with my children. They certainly need to know so they can make the choice of testing for it or not. And they may need to seek some counseling. I know I would have wanted that choice. If they test positive they can still have children, through invitro where they take the HD affected gene out. That is great news.
 
Now I am winding down on day two of this terrible tragedy in my life. I feel a lot better after opening “the spicket of tears” and letting it out. I also feel better having journaling because it lets me put some clarity to my thoughts and emotions. As one writer put it, “I know not what the future holds, but I know who holds the future.”

Prayer

“Father, today was the worse day of my life. Everything as I know it is over. I have this terrible and dreadful disease that will eventually take my life and it’s not going to be an easy ending. The one thing I am counting on is that You will be with me. My mind is tired and emotionally I am drained. So I am asking You to step to the plate for me so that I can get my act together. I need You. Amen.”

 

 

The Test Results

“Many of us are tempted to think that if we suffer, the only important thing is to be relieved of our pain. We want to flee it at all costs.” — Henri Nouwen, “Turn My Mourning Into Dancing, p. xv.

When I opened the envelope and read “positive” on the top, I felt shock and numbness. I could not believe what I was reading, especially after the neurologists had said that he did not see any symptoms of HD at all. His optimism gave me a reason to be optimistic as well. After going to my regular doctor and was getting pretty decent bill of health, which included normal levels of testosterone, I thought almost certainly I was going to “dodge the bullet!” So when I read “positive” my heart sank. “Oh no, not me! Now what?” As the doctor started to talk, I missed most of what he was saying because my mind had shut down to try to take this in. I had been making plans for a “negative” result and now all that had to change. Even though there was no visible chorea movements, I was concerned about my cognizant abilities. The team, however assured me that since my father, who was the HD gene carrier, had been fully cognizant up until the end, that most likely, I would be able to do the same. That gave me a lot of encouragement. However, I knew that I would have to make some adjustments in my employment since it’s imperative that I did not go through a lot of stress. In fact, my job, if managed correctly, could actually help me through this grief process: I am a hospital chaplain. Day after day, I walked into rooms where someone had just received the news that he or she had cancer and had six months to a year to live. Or where someone was being pulled off life support or had just died and I had to provide spiritual and emotional support. Now I was the one getting this horrible news. All of sudden, I was able to connect with those patients and their families. I had something in common with them: a terminal illness. Now I was grieving.

As I was driving home, I was in still in shock. I didn’t show any emotion and in fact, tried engaging in small talk with my wife, Claudia. It really hadn’t sunk in. I was trying my best to think positive and thank God for allowing me to know this and to make the preparations I need to see this through. I kept telling myself that I am very blessed to be 47 and still functioning in my job as a senior chaplain. I was carrying out my functions without any problems and I was struggling with a few things but I chalked it all up to stress.I stopped to see my mother and we cried together for a while. This was déjà vu for her because she had deal with my father. This was bringing back a lot of emotions for her. He had died at the age of 68. And she had been with him through his last years and had seen the physical toll it took on his mind and body. He actually died in the same hospital where I was currently working. He had reached a point where it was impossible to swallow anymore and he had refused to have a feeding tube. So according to his wishes, we put him in hospice and let him die with peace and dignity. It was the best decision we ever made.

Having gone through that experience helped me to understand hospital ministry and hospice. And as a pastor in a multi-church district, I was being blessed but I was impressed that God wanted me to do something different. When I met the hospice chaplain who took care of my father I felt the calling to do the same. And it would prepare me for whatever my come my way.

Now I was at that point in my life where the question is now, “Is being a chaplain for two years going to prepare me for this challenge? Is being a chaplain automatically giving me that connection to God that I am supposed to have?”

That is why I have to decided to write this book, which will probably more of a journal than a book itself. The purpose to be able to express my emotions on paper and also be able to theologically reflect on my day to day journey. I hope that this book serves the purpose of inspiring other HD patients and their families as they journey with God and myself through this difficult waters.

I feel I have to mention a couple of authors whose books and writings have inspired me when going through difficult times. I have enjoyed all of Philip Yancey’s books but, “Where is God when it Hurts?”, “Prayer: Does It Make Any Difference” and “Soul Survivor” have been truly inspirational. And Henri Nouwen’s “Turn My Mourning Into Dance: Finding Hope in Hard Times” and “Wounded Healer” have been my favorites. And of course, as a Christian, the Holy Bible in many different translations has the mother of all books, the book that inspired all of us to live each day to the fullest.

Prayer“Father, today I am burying life the way it used to be. My former goals and dreams are gone. I am not sure what to do but I trust you will show me. I place my new life in your hands. Help me develop a new purpose in what is left in this life so it may not be in vain. Amen”

How I am dealing with the spiritual, emotional, psychological and physical aspects of having HD

On April of this year, 2007, I took the blood test that can identify the HD gene and I tested positive. Since I had been a minister for 10 years and a chaplain for 3 years, I thought I was prepared for receiving the news. Let me tell you, there is nothing that prepare oneself for this kind of news! This blog is an attempt to capture my feelings and emotions on the day of the news, and the days and months after. For those of you who do not know what HD is, I am including some links for more information and some other places to get knowledge. In this blog, I don’t have any answers, I am only sharing my journey and hope and pray that it will give some insight of the process and how to deal with it. I am also writing this for the purpose of being able to maintain that creative side of my intellect that is so necessary when this kind of an genetic disorder hits. Let me say that I am doing very well today and I will share some of the things that have helped me. I am able to function very well. In fact, I hold a full time job and I will be able to function 100% for a very long time. I am writing this because I want to share this with others and hope that it will give them peace and encouragement. Finally, I have to thank God because through this expereince I have been able to grow in ways that I did not know I could grow. Just as Job, I am able to say; “Naked I came into this world. Naked I will leave it. Blessed be the name of the Lord.” It is God Who gives all things: good and bad. And I am learning that I need the bad just as much, if not more, than the good.

My prayer is that as you journey with me, you will be able to see God present in my life and therefore see Him present in yours.

Chaplain Vance Torres

Here is that HD link.

http://www.hdsa.org/about.html

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