6 Minutes Wrestling With Life

"There is a club in this world that you do not join knowingly.  One day you are just a member.  It is 'The life changing events club.'  The fee to join the club is hurt beyond belief, payable in full, up front for a lifetime membership.  The benefit of the club is a newfound perspective on life, and a deep understanding that you may not be happy about your current situation, but you can be happy in your current situation.  The only rule to the club is that you cannot tell anyone that you are a member.  The club does not provide a directory of its members, but when you look into a member's eye, you can tell that they too are part of the club.  Members are allowed to exchange that brief eye contact that says: 'I didn't know.' Being a member of this club is the last thing that anyone initially wants in their life.  Being a member of this club is the best thing that ever happens to a person in their life, and there is not a person in the club that would ever give up their membership.  If you really look and know what you are looking for, you can spot the club's members; they are the ones that provide a random act of kindess and do something for someone who can never repay them for what they have done.  They are the people spreading joy and optimism and lifting people's spirits even when their own heart has been broken.  I have paid my dues; my lifetime membership arrived today, not by mail, but by a deep inner feeling that I cannot describe.  It is the best club that I never wanted to be a part of.  But I am glad that I am a member.

-John Passaro, 6 Minutes Wrestling With Life

Say What You Need to Say

I had an awesome conversation with my mom the other day.

I know we still have time left, hopefully years, but I've learned my lesson from Jeff.  I felt I said what I needed to say to him and heard what I needed to hear from him for the most part, but there are still some things I wish I would have asked and things I now know I needed to hear to help me heal after he was gone.

So, I said what I needed to say to my mom and I also told her the things I talked to Jeff about that I'm glad I got to hear and also the things I wish I would have asked that I felt I needed to hear now that he's gone.

There were a few tears during this conversation but mostly it was lighthearted with some laughs about a very serious and heavy topic. I'm so lucky that my mom is such an easy person to open up to and I feel like she had the opportunity to open up to me.

One of the hardest, yet most important things we talked about was what she was thinking in regards to the end of her life and how she would like to pass. Ultimately, that is her decision and I understand and respect her when she says that she wants to think about it and discuss it with my dad before she makes a final decision.

Going through what I went through with Jeff, I know I am strong enough to let her go before I am ready to let her go, no matter how much I want to keep her here in the physical world.  Although we may suffer tremendously in losing her, ultimately, it's her decision and no person has the right to interfere with her decision so it's important that she communicates what she wants to the people who have the power to make the decision if she is unable to voice what she wants near the end.  I asked her to have these conversations with my dad and sister as well as any other family members that she thought might need it.

I feel like I said what I needed to say and heard what I needed to hear. And with so much time left with her, I will be able to have even more things to say and hear even more things I need to hear to be able to heal once she finally leaves us for a much better place.

A Different Cycle

With cancer there is a cycle of discovery, fear, hope, and, in Jeff's case, eventual loss.

With MSA the cycle is discovery, fear, and eventual loss.  There is no chance for hope.  It is incurable, with no possibility of remission.

So that means we have to create our own hope.

• Hope that we enjoy every last finite moment with Mom
• Hope that she does not suffer too much
• Hope that her quality of life is greater than quantity of life
• Hope that Jeff and Grandma will be waiting for her when she's ready
• Hope that we are unselfish enough to tell her that she can go and leave her wasted body
• Hope that we are strong enough to go on without her and find happiness again.