Friday, April 30, 2010

Lesson 1 - Good Grief

While my brother was dying and after he died there were a host of feelings expressed - simply because he came from a large family, which exponentially increased the grieving process. I've learned that: grieving is entirely personal, there's no right or wrong way to grieve, I shouldn't be made to feel bad if I don't grieve the way you grieve, and some aspects of grief are quite common.
I found the Mourners Bill of Rights online, and thought it was quite helpful so I've included it here.
The Mourners Bill of Rights by Dr. Alan Wolfelt
1. You have the right to experience your own unique grief.
2. You have the right to talk about your grief.
3. You have the right to feel a multitude of emotions.
4. You have the right to be tolerant of your physical and emotional limits.
5. You have the right to experience ―grief bursts.
6. You have the right to make use of ritual.
7. You have the right to embrace your spirituality.
8. You have the right to search for meaning.
9. You have the right to treasure your memories.
10. You have the right to move forward in your grief and heal.

My brother was the first to die - and I heard this statement so often, "Its hard for a child to pre-decease his parents" that it almost became cliche. But what this statement allowed me to do was cut my parents some slack - particularly my mother. There are many stages to the grieving process - denial, fear and anger being some of them, and to my mind at that point in time these were exhibited by my parents. Watching someone die is hard to deal with, especially at the end. It's probably why I chose not to be there at the end - I didn't know how I would handle it and didn't want to find out. As a parent myself, I would like to think that I may handle things differently, but who knows maybe I would fall apart also.

For the siblings, he was the big brother. A big brother means having someone you can look up to, having someone to go to for advice, having someone to intercede on your behalf to overprotective parents so that you can go to your first track meet, someone who can dispense advice freely because he was consistent in his beliefs. Yes he may have been overbearing at times, but he was big brother. You never know what this means until that person is gone. He had a different relationship with each of the siblings - but there was a relationship. The hardest part seemed to be dealing with the VOID left by his death. At the funeral, I discovered many unknown aspects of my brother's relationship with each of the siblings - a brother always wanted to be like him physically (before scleroderma he looked like a bodybuilder) and professionally (being successful in the financial industry); he was able to accomplish that. A sister said he inspired her, in spite of his illness; he told her to "Live like the Birds - they have no worries yet they are always well taken care of." What I learned was the emotional connection he had with each one that we didn't always communicate while he was here. The stories were told with laughter and poignancy.
There were times when there wasn't much laughter - when everyone was questioning in their own way - why now and why this way? These questions were a manifestation of what he meant to each person and their grief. And so to say it was tenuous at best would be an understatement. Everyone grieves in their own way - some are loud, some quiet; some rant and rave; some internalize; some are quick to accept the circumstances for others it may take awhile; some may feel they have unfinished conversations with one who passed on; some may dream of him and feel his presence. Its all OK. Its all OK.
Grief is good and can be cleansing - and once we go through it and get to the point of healing, it allows us to move on with greater clarity - respectful to each other, being open with each other, communicating in love, and building on what we've learned from our grief and loss. I think sometimes we forget to view things through the lens of grief - recognizing that we've all suffered a loss and who knows when and how that loss may affect us.

I'm also amazed by the compassion of people once they hear of my loss; most seem genuinely sorry as if they too have lost a brother. That humbles me - for I hope that I can express the same depth of emotion if the tables are switched. Basically, everyone wanted to do something - from sending cards, to sending donations to the family, to cooking or just being there for me and praying (which I do not take lightly).

Grief, while intensely personal is something we must go through. Once we have gone through - we are better for it. Yea though I walk through the valley of the shadow of death I will fear no evil, for thou art with me, thy rod and thy staff they comfort me. That's the good in our grief.

Friday, April 23, 2010


The intent of this blog is not to be depressing but to be realistic. Before my brother passed away from Scleroderma, I was not as aware as I am now about the disease. His wife knew about the disease and could probably provide great advice to anyone dealing and living with the disease (but this is an aside.)

My brother lived for 17 years with the illness and that in and of itself is a testament to the medical care he received, his support system, and his will to live. As I read up on this illness, treatment has come a long way from when he was first diagnosed.

So be encouraged; we don't know why things happen in life or why we are dealt the hand we have. I think what my brother did well was display how to live with the disease. At his funeral - this was a consistent theme from the many people that he impacted.

So living with Scleroderma may be difficult, but you can thrive while living with it.

Wednesday, April 21, 2010


It was mid February and we received a call that my brother was not doing well and that he was hospitalized. We had received these calls many times within the past seventeen years, but this time something seemed different - there was a heightened sense of urgency from his wife. For the past seventeen years my brother had lived with Systemic Scleroderma (also called Connective Tissue Disorder) and seemed to have exhibit every symptom that goes along with the disease. It started with collapsed lungs, and progressed to arthritis, foot pain, weight loss, shortness of breath, and most recently extraction of the teeth. His wife was versed on the disease and knew his numbers and how well he was or wasn't doing.

As usual, once we received the call we worried inwardly, but prayed outwardly. In this instance he was exhibiting shortness of breath but it wasn't noticeable to anyone since he was already on an oxygen tank. During a regular doctor's visit, the doctor picked up on it and from there after visiting another doctor it was determined that he should be hospitalized.

Soon after, we received another call where he had suffered a seizure and was in intensive care.

At this point, something in my spirit told me that this might be it.

Within our family, my husband decided that he would go down to visit especially if this was the last time he would see him alive. Approximately ten years ago, we got a similar call from a cousin who was in the final stages of colon cancer and we knew at that instant he was on his last legs; my husband made the decision to visit him and talk with him before he died. He passed soon after. This call felt just like that call ten years ago. My husband and my brother were very close and I was OK with him spending the time with him and representing me.

My brother had a lot of time to think while living with this illness, and knew how he wanted to die when it was his time to go and had conversations alluding to what he would want. My husband was able to see my brother, pray and spend time with him and be a support for his wife and children. As his wife said to me afterwards, "Thanks for lending him to me."

My brother passed over from this life to heaven on March 5th, and even though I was expecting it, I was caught off guard. I literally felt like I had been struck in the chest with a brick; I could not breathe momentarily.

I guess that's the point - even though death is imminent, it still catches those who remain off guard.