Life Is Good

Since I posted my last blog entry I have reevaluated a few things in my life. The last entry was very negative and maybe a bit disturbing. Well, things really were not as bad as they seemed at the time. I have found that if you take a step back and sleep on it, the problem doesn’t seem unsolvable anymore. I think it has something to do with releasing control, letting go long enough to reevaluate the situation.

So, that’s what I did along with relaxing and not trying so hard when it’s obvious I’m not making progress with my current methods. I decided to step back and look at what I can do instead of what I can’t change. After that, I found myself taking charge as much as I can in my life. I found a couple of additional caregivers to cover more of the time for my care and relieving my aging parents of almost all my care. I also have been trying to be more positive in everything I do.

This has relieved a lot of stress in my life. I am finding that I was causing most of the stress myself! I feel so much better! I have more to do in doing what I can do to improve my life and have a future that I am in control of.

I am sorry if I scared anyone with the last blog entry. I should have should have written a follow-up before now but I just couldn’t put together the words while my reevaluation and some counseling was in progress. I am okay. Life is good! And I mean it this time.

Peace to all.

Saturday sucked

I don’t know what it is, a personality flaw, just the way it is… or what? Seem like no one was around at all to talk to. Yes, my parents are around the house but can’t really relate or find anything to talk about. Well… we did talk about how to bring my girl Maria over from the Philippines but they decided there’s not enough room in the house for another person so I should just forget it. I guess love and maintaining a relationship for 10 years makes no difference. Too bad to sad. Lucky you have what you have so don’t push it toward any ridiculous dreams and goals.

Then another Saturday evening unmotivated and playing endless games of solitaire. The old folks were reading the newspaper in the den and watching TV at a very high volume. Is that so much ask to have someone on my own. Everyone else is busy with their lives. I’m just trying to get a life. I’ve been working on it just to be told to forget it. Now doesn’t that suck?

Scary!

I am asking everyone to say some prayers for my friends in the Philippines who suffered a 6.9 earthquake yesterday at about 10 p.m. our time. My girl Maria lives about 40 miles south of the earthquake area. I called her cell phone just 15 minutes after the earthquake and she said the pictures were falling off of the walls during the quake. She was going to check the house for any damage and maybe go up to the city to check our Internet café equipment for damage. I went to bed thinking it was minor until I read the news online… she’s okay but I wish I would have called her back to see how bad the aftershocks were.

I have talked to her the next morning now. When Maria went to city and was in the store checking on the equipment, another aftershock came through and everyone ran out of the building into the street. I think at that point, the electric power went off. The aftershocks continued into the evening, and then a tsunami alert was issued and everyone was told to get to higher ground away from coastal areas. She spent the night at a friend of her brother’s in the mountains.. When I got through to her it was about 8:30 a.m. Tuesday morning.. The original earthquake had been Monday 11:49 a.m.. She was going to go back to the house to check on things. The tsunami alert had been lifted.

So far, the damage seems to be minor in the area in which she lives. Thank God. But in the area where the maximum damage occurred, at least 25 people lost their lives, mostly due to falling structures and mudslides caused by the earthquake. Please pray for those families.

The ‘Manny’ Event

Manny Pacquiao

I am not usually a big follower of boxing except when it comes to Manny Pacquiao.  I have not actually watched an entire fight live but have followed two or three on a Yahoo text feed.  The reason I root for the “Pac-man” is twofold.  One, he is a great athlete that is not interested in becoming extremely rich.  He wants to help the poor people in his country.  He has taken his fame and riches and is giving them back to the community where he was born.  To me, that is extremely admirable.  My second reason is my girlfriend who is Filipino and lives in the Philippines.  She is the most wonderful person I have known.  Maria and I met nine years ago on line and our communications have been nearly every day since that day in February 2002.

My Maria grew up in a neighborhood on the Montenegro farming plantation near Bais City in the Province of Negros Oriental.  These neighborhoods are called barangays and are the smallest political division in the Philippines.  The word is derived from the Spanish word barrio.  The people living in the barangay are the farm workers and their families.  The land belongs to the Montenegro family.  The houses are mostly nipa hut construction from bamboo and coconut palm leaves or concrete block or a combination of both.  Manny grew up in a similar neighborhood I imagine.  Maria is the sixth of eight children, the first four are older sisters, then a brother, and two younger brothers.  They lost their father when she was five years old and at that point everyone who could had to work to support the family.  However they made sure the younger children were to continue their education.

Maria has worked very hard all of her life, has always been very poor, life has been very difficult but yet she’s like one of the most naturally happy people that I have ever met.  She has persevered throughout her life and still has a positive, hopeful outlook.  Much like Manny Pacquiao when he fights, he perseveres to the end and seems to get even tougher and almost unbeatable.  I have come to admire these people greatly.  I am often surprised by the wisdom that Maria has when we are talking and I have been in a low mood.  She always comes up with something very wise to help me out.  Not only that but, her big smile and laugh always can bring me up. I love her dearly.

I think I have learned a lot from Maria and watching Manny.  No matter what life throws at you, you should never give up, be as positive as possible because you have been blessed with family or friends, be happy and smile.  I have been blessed with family and friends and with my special friend and love Maria.  She was an answer to my prayers, a miracle.  I have also been blessed with a longer life than expected from someone with Duchenne muscular dystrophy (DMD).  Maria and I are hoping for yet another miracle… to be together one day soon.  Everyone please pray that we are given that chance.  In the meantime, we will persevere and stay positive as we work through the obstacles that keep us apart.

Tick Tick tick…

How much time do I have left? Do I just get ready and be good and forget all my hopes and dreams? I think a lot of people would be disappointed terribly. On the other hand does anyone even know me well enough to realize that I have hope and dreams…?

“Be a good sport, Tommy, just sit there and smile”. I tell myself. But maybe I have done myself an injustice by not expressing myself and letting people think everything is fine and dandy when the truth is otherwise. The truth is that I am as mad as hell! This disease is continuously trying to take something away from me. I am fighting for my life, dignity and sanity on a daily basis. I am not ready to be written off. Life is a gift and it’s a waste if you do not live life to its fullest.

Where do I go from here? Stay tuned for more details…

Writer’s Block

I have not posted since September because I don’t know what to say. Should I stick to posting only inspirational positive messages or should I just post everything that comes to my mind? Living with this disease is not always easy thing to take. I could take you to some dark places that I find myself sometimes. Do you want to hear about what I face everyday? I’ve heard it’s therapeutic to vent my feelings somewhere. And currently I don’t think very many people are going to check my blog unless I direct them here. So I guess I could say just about anything and not expect a huge reaction. :-)

Well I guess I will post this message in the meantime and then come back and post more items describing what I’ve been going through the last few years. Stay tuned.

Woo Hoo! A New Record!

success barometer goal of $16,500, raised $16,901Today with the hard economic times you keep hearing about on the national news, I thought I would be having difficulty raising money for my annual MDA drive.  In spite of that, my donors and I surpassed our goal was a record year for my fundraising.  A huge thanks to everyone who contributed!  You are TRULY HEROES!

Together we have been a great help to those of us affected by muscular dystrophy.

I Am Published!

Back in April I responded to a posting on the DMD Pioneers mailing list titled “What the Heck is Glossopharyngeal Breathing?” stating that it was a technique also called “frog breathing” and I have been using it for years. The next day I was contacted to write an article for “Ventilator Assisted Living“.

When I frog breathe I use my tongue and pharynx (basically muscles in the throat) to assist my breathing when I have to breathe on my own (see article for more details).  It makes me look like a fish. I was doing it long before I learned the name from a med student at the muscular dystrophy clinic. I used the technique all the time before I started using a ventilator all the time.

Here is a link to the issue containing the article:

Ventilator-Assisted Living June 2010

Congraduations

Early June is always graduation time. I have been to many high school graduation ceremonies in my family for nephews and nieces. Sometimes they are painfully long… literally painful for me since I need to be moved occasionally and the longer I wait the more painful it gets. But the one I went to this year went by quickly and was well organized. However I did leave after my nephew crossed the stage mostly because I was “illegally parked” in the passageway.

The addresses given by the prominent students were typical with each adding his own personal flair. They said the usual things about moving forward in life and contributing to society to change the world. Great stuff! Keep on dreaming and striving because that’s what life is about. Everyone needs a goal to accomplish and not get lost in the narcissistic common culture. Oooo… big words and a bit cliché.

I can’t help but feel like I am standing on the outside looking in. Sure I have accomplished more than most with my limitations but I feel like I’m missing the most important thing. That is first person involvement with a family of my own. Mostly I always hoped for at least a partner, my soulmate, a wife. Then maybe I would feel like part of the “real world”. Some of my friends would say I’m lucky NOT to be married because I’m free and marriage isn’t all it’s cracked up to be. I digress.

What brings on this train of thought is a graduation party that I went to for the son of an old friend. The old friend is the sister of one of the friends of mine who had DMD and lived next door to me in college. He has been gone now 27 years which means I have outlived him by more than twice. I have been in this situation before when I see a picture on the wall of an old friend and wonder why I am still here. I hope there is a reason for my continued ordeal when I could have had hero status in a prominent place on someone’s wall. I know there is a reason.

Another 15 Seconds of Fame

I was contacted in early May by Bill Norman of MDA’s Quest Magazine asking if he could do a piece on their online edition about me turning 50. I answered his questions and sent him some photos and this is what came out:

http://quest.mda.org/news/texas-achiever-dmd-turns-50