Hello my brothers and sisters. I realize that it has been a while since my last post and I am sorry for my absence. My family has been pushing me to write more often and to drop the “whoe is me” behavior. So here goes the new and improved Living with ALS. I have remained relatively busy for the past few months. I have been on television, twice with the lovely Hannah Mullins, ABC Channel 10 News. Wonderful lady, let me tell ya! Here is the first of those two interviews:
After watching this segment on the Today Show about Hope Loves Company, a free camp for children of ALS. I contacted the co-founder of HLC, Jodi O’donnell-Ames and asked her to bring Hope Loves Company to California for the first time ever. She loved my story and decided to fly to California to meet me and my family at my home. What an absolute angel. Well, on Veterans Day weekend 2017, California will have their first camp. Check out this wonderful camp for children of ALS:
You may recall from an earlier post, that I had reconnected with my sibling sister (well on Facebook, anyway) and then lost her again (unfriended me). I sent her one and only one message and she disconnected with me. I have no idea why? I was hoping to reconnect with her before I run out of time. I guess that will remain a mystery in my life and now it’s time to move on.
This next one is the reality that all PALS face however, it requires a special moment of silence here in my post…I am very sad to say that three of my brothers lost their war with ALS and are finally at peace. I love you, my brothers. Thank you for your kindness, your friendship and your guidance. I will continue to carry the torch for our disease. God Speed…
Okay, this next one was for therapy for my depression. I decided to reached out to my blood relatives, via Facebook messaging. You know, just to let them know that I am still here. I wasn’t expecting much, maybe a “like” or a smiley faced emoticon? Well, anyway, my strategy worked. I found my huckleberry. It was my cousin, who immediately told me to go have sex with myself (if only that were possible). Needless to say he had several nasty words for me and I didn’t turn the other cheek. I fired back with some words of my own.
At least, I was able to get a reply. I discovered why my family left me out of my grandfather’s estate. Apparently, because I had selfishly joined the Marines to go serve my country, they had taken it upon themselves to write me off. Whew, and all this time I had thought that they just didn’t like me.
That was the sour grapes, now watch how it turns into wine…
Thanks to my hard work of trying to get myself to a “good place” mentally, I discovered why I was not yet dead and buried. I realized that I Have to Pay It Forward! Yes, I have been truly blessed in my life and I have to start sharing those blessings with others. I had to stop looking in my rear view mirror and embrace my glorious future. Yes, in order to do this I had to heal first. Deal with all of my personal demons, accept my ALS and move on.
With special thanks to an idea from Hannah Mullins, I started a movement called Speak for Yourself to raise money for PALS to purchase communication devices. With my real families love and support, we have been working hard to do something beautiful. People with ALS will lose everything, physically but, they don’t have to lose their voice. Speak for Yourself is raising money to assist PALS (Persons with ALS) to purchase communication devices. Here is the link and second interview with Hannah:
I have also been blessed with reconnecting with several friends whom, I had believed to be gone permanently from my life. You may not believe this next miracle but, here it is folks. I received a phone call from a member of the group of guys that I used to run around with. He told me something that seemed much too surreal. I don’t know how to put it plainly but, here it is. My old crew of brothers are coming out to visit me in September. Oh What an Absolute Awesome Gift!
You see, my friends, thanks to all of the previous events that helped shape my life, including the disease, I am truly grateful. We don’t get to choose everything that happens in our lives, good or bad, but if we continue to do the work then good things will come. Thank you God for blessing me with all of love.