I have started my fourth week of albuterol, and I have good news to report. No miracles, but I still feel some increase in my strength, they are just little things, but they are none the less noticeable not only by me, but also by others. Keep your fingers crossed that this keeps up, I like it.
As most of you know, today is Labor Day, which means that the Jerry Lewis MDA telethon is on. I just turned the TV to channel 9 here in Tallahassee, it appears that a lot of local businesses are making donations, but the people picking up the phones are not overly stressed. Check out your local tv station, and if they look as bored as they do here in Tallahassee, consider making a call.... 1-800-631-0746 or go to http://www.mda.org We need the money, not just for the kids, but also for us adults. We need funding for research, research is our only hope. Thank you to those of you who donated on my website as well.
Before I was diagnosed with MD the telethon was just something that was on TV on Labor Day, some kind of boring show that was on all day. I am not even sure we ever donated money, I had no idea what MD was. Well that has changed. I still don't watch the show, but now it is for a different reason. The reason why I don't watch the show now, is that it rocks my boat, the boat I sail in every day called Denial.
My life is different from the lives of most of you, well, everybody's life is different, but there are things I do differently. I don't just run to the store, I don't just do a lot of things that most people take for granted. I have learned to live with the way my situation is right now, I don't like it, and at times I get angry and call myself names. I know there are people out there who are worse off than I am, my heart breaks for every single one of them/you, but I take no solace in it, people are by nature selfish.
I have only met one other person with MD, and he is a 11 year old boy. His mother works in our local grocery store, and I met him at an outdoors event about a year and a half ago. His MD is different than mine, with different symptoms and progression. I don't relate to people with MD. When I turned the TV on to the telethon about an hour ago, the good ship hit a hurricane. There was a little "intermission" where they showed a video of people with MD, and my brain immediately said: "that is not me, it can't be". I know I am a long way away from the pictures they showed of people needing lifts etc to get from their bed to their chair etc, but it none the less became very real to me in just one moment. It made me sad, sad for the people I saw, but mostly I felt sad for myself, I felt self pity, anger, and grief. Even though I try to have a positive outlook on life, my ship will sometimes get hit by a hurricane, and then there is very little I can do to steer it. The reality of my life is that I will more than likely at some point be 100% dependent on other people. On a good day I will tell myself that we probably all will at some point or another, but on a day like today, where it is a little windy around me, I feel sad that it will probably happen to me a lot sooner than it will happen to everybody else.
Unfortunately this feeling of self pity, sadness, depression or whatever you want to call it, brings out a side of me that I don't like, namely the jealous side. Yeah, sometimes I am jealous, and there is nothing I can do about it. I am never jealous of people who have had to work to get what they want, or people who don't show off, but on days like today I have a very hard time feeling happy for people who make big problems out of small issues.
A few weeks ago I was encouraged to write down five good things about the day every day, I am not as good at it is a probably should be, but I have decided to share my good things with you today, maybe it will help the hurricane blow over.
Today is a good day because:
1. I get to spend it with Tom, James, and Clifford in our wonderful house!
2. The sun is shining, and I get to sit outside and enjoy it. (while watching Tom mow the lawn??)
3. I am going to a BBQ later
4. I have a lot of people who care about me.
5. I woke up and I am still able to do everything I was able to do Yesterday!
Enjoy your day, each other, and what you have. Hurricanes can come on quicker than you think!
P
Contact email keepinghopejourney@gmail.com
Amen, Pernille. I so agree with you.
ReplyDeleteIt is so annoying when people complain about such trivial things... It is soooo irrelevant in the whole scheme of life. We should all be thankful for the wonderful people we have in our lives and thank them daily and not worry about the "things" we do or don't have. I pray for you daily and a lot of my other friends that are dealing with hard issues in their lives..
Hey søster, det ville være umenneskeligt hvis ikke du havde dage som disse! Jeg synes det er vildt imponerende hvordan du takler din selvmedlidenhed. Jeg er utroligt stolt af dig og den styrke du udviser. Husk at selvom I bor i florida er det jo ikke hver dag at der kommer en Hurricane, faktisk har i jo for det meste ret godt vejr :)
ReplyDeleteHej Lillebror,
ReplyDeleteDet har du jo ret i, for det meste skinner solen jo :-) Tak for paamindelsen.
I really liked the metaphor of the impending hurricane. Also really like the parts of the piece where you look at how MD is now part of your identity and how that rocks your boat. There is something (dare I say it) truly soul searching about this post... writing about self-pity and jealousy is really hard stuff to own up to and it is so human and so honest.
ReplyDelete