About Me

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For those of you that don't know, I was diagnosed with ALS in March 2007. After two more opinions, the diagnosis was confirmed in the fall 2007 at age 39. This coming August (2010) I will have been married for seven years to an incredible wife, who has supported me throughout. During the course of our marriage we have been lucky to have two wonderful, amazing daughters. Sydney, will be 5 in November. Emily, will turn 2 1/2 in August. Currently, we reside in New Jersey with our Beagle, Trixie.

Monday, September 6, 2010

Post 13 - Return of the Blogger

Forgive me Yoda, for I have waned. It has been 15 days since my last blog.
And so it goes...

Overall, the last two weeks have been quite difficult for me. This includes two falls, one near fainting spell and a trip to Great Adventure (Although tiring, that was a good thing). For me, summer vacation virtually ended on Monday, August 16. That is the day that the majority of my staff returned to work full time. Although I still had two more Fridays off, and one vacation day worked in, my workload has increased significantly since the 16th. Again, the refreshing bounce of rejuvenation I was hoping to receive after a reduced summer work schedule was absent. I was truly feeling to expect a little bit more energized and rested by the time school started up again, much like the hoped-for burst of energy I was hoping to experience following my vacation. Again, the feeling was just not there. My mood for the last two weeks has not been what I wanted it to be, and that in turn, makes me feel a little worse at times. This I admit has made it difficult to keep my spirits up over the past two weeks. In that time, I have begun to read two books. One on a cleansing diet and lifestyle, and one on meditation, in hopes that these will provide me some benefit.

The two falls were not even my low points during the week. That would have come after seeing my reflection while walking to my car. I know my gait is not a smooth one, and that time I stumble and teeter like a drunk that has had one too many, but when I finally saw myself, and what I looked like while I was walking, even I cannot believe how bad I looked. Twice within the past two weeks, once with my brother-in-law, and once with Tracey, after walking, they commented to me how difficult Walking appeared for me and how much I appeared to be struggling. The ironic thing is, both Instances they were referring to, I actually felt pretty good and thought I was walking rather well. There were other times I was with them that I felt like I was struggling, but it did not appear so to them. Once again it seems the great illogicality of ALS has struck again.

I think I am finally ready to admit that for the first time, I'm beginning to look as bad as I feel. It worries me that this may be the first sign that I am giving in. When will I know that enough is enough? When will I know that it's time to go on disability? When will I know that it is time start using a wheelchair? When and how will I know if what I've been doing, how I have been living my life up to this point since the time of my diagnosis, is the best long-term solution for me and my family. These are questions that I continually find myself asking, more and more frequently for which I do not have an answer. Actually, most of the time I can answer all those questions, however, each time I ask the questions the answers change. It is a great struggle for me not knowing what the future will bring, both immediate and long-term. I do not like surprises of any kind. I need to know what's coming, so I can prepare. I do know that getting up and going to work for the last three weeks has been very difficult. It's almost as if the difficulty has been increasing day by day, which is a total new scenario for me.

Let me take you back almost two weeks ago. (Insert your own Wayne's World dream sequence here)

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The first of my falls occurred fortunately, with very little fanfare. I was out on the driveway about to get into my car. I was putting my briefcase in the backseat like I always do. I turned to open my car door and simply lost my balance, falling onto the driveway. Unfortunately, we have a gravel driveway, which has been stripped due to the snow plowing over the winter, and therefore, the driveway is as much dust and dirt as it is gravel. Because I had fallen down in between my car and Tracey's car, she could not see me from the house, and because of the way I had fallen, I could not get my cell phone out of my pocket. I had tried to get myself up, but after about 30 seconds I knew was not going to happen. Finally, I had the idea to set off my car alarm, shut it off, and set it off again. After the second time, Tracey, seeing my car still in the driveway, realized something was wrong, and came out to help me up. Since there appeared to be no signs of serious injury or damage, I simply dusted myself off, got my car and drove to work. The whole thing happened very matter-of-factly. Almost as if it was part of my daily morning routine.

The next fall was a little bit more dramatic. With my recent spate of falls I figured that the best odds would be on the dog for causing my next fall. I was partly right in that I can blame the dog indirectly for this fall. Trixie has this annoying habit of sitting on my feet when I eat dinner. Usually, I will pull my feet out from underneath her, in which case she gets up, moves to where I placed my feet and sits down again. This time, when I pulled my foot out from underneath her, my sock came off my foot a little bit. After dinner, when I was walking from my bathroom back into the bedroom, I stepped on my sock and thus tripped myself much in the same way you would trip yourself by stepping on your own shoelace. Again, I was holding my cell phone, which went flying (I don't know why my treatment team tells me to carry a cell phone in case I fall, since it seems to go flying every time I fall) This time, however, instead of going down like a tall oak tree and hitting face first, I was just barely able to get my hands out from underneath me and slightly cushioned the blow. My head kind of bounced when I hit the floor (almost the same spot where I broke my nose) and my head became lodged underneath the bed. Tracey, of course, hearing the sound of me bouncing off the floor, came running to our bedroom, with Sydney and Emily close behind. When Tracey found me, I was trying to dislodge my head from between the bottom of the bed frame and the floor. Not as funny as falling in the puke, but definitely something worth laughing at. Tracey had to move the bed over before she could help me out. The best part was about a half-hour later, Emily came back into the bedroom, where I was laying down, to ask me, while pointing underneath the bed, "Daddy, why your head under there?" This at least gave me another laugh. Thankfully, no broken bones but I did bruise my right hand and get a couple of bumps and bruises on the right side of my face. My right knee was also scraped up (hardwood floor burn) and my left foot kind of got caught underneath me as I was falling and was swollen and bruised for a couple days. Overall, no worse for wear, whatever that means.

In between my falls, I almost experienced my first feinting spell. I was holding my first staff meeting of the year last Monday. It was another one of those 97° days, with 95% humidity. Usually I will go right to my meeting in the morning without stopping at my office, but because I left something in my office, I had stopped there first. After leaving my office, I had stopped at the Wawa (a convenience store for those of you not local to the area) to buy some doughnuts and cookies for the meeting, because, yes, I am that great of a boss. Well, what should have been a five minute detour turned into a 20 minute side trip due to the difficulty I had getting out of my car, navigating the store, getting the doughnuts and cookies up to the cash register, paying for everything, and getting back to my car. This, after already stopping at my office and walking back and forth from my office, through the school, to my car. As I said, what should have been less than a five minute job literally became a grueling 20 minute workout. When I finally got into my car I was exhausted. I did not even have the strength to pull my seatbelt around me and secure it. This experience was more strenuous than any workout I have ever attempted. By the time I drove to my meeting, which was about two minutes from the store, I was sweating profusely and sucking wind. I pulled up in front of the building at 8:28 AM. My meeting was scheduled to start at 8:30 AM (again, I expected my doughnut run to only take about five minutes). One thing I hate is being late, especially for my own meeting. Thankfully, the first item on the agenda was to show a video from one of our summer programs. As the video started, I slipped into another room, fell into a chair, and Tried to catch my breath and cool down. Fortunately for me, what was scheduled to be a 15 minute video, turned out to be about 30 minutes long, thereby giving me some extra time to collect myself. My monthly meetings, which I try to hold to under 90 minutes, never go beyond two hours. However, my first meeting of the school year, which this meeting was, typically goes a little longer. It was a little before 9:30 AM when I started and a little before noon when I ended. After the meeting, which is customary, I will usually discuss individual issues with staff members. This day was no exception. It was about 1:15 PM when I got back to my office. Although I stayed until about 3:30 PM my day was done when I left the meeting. By the time I got home on Monday I had a little headache. I sat down in my comfy chair and ended up taking a two-hour nap. Throughout the night Monday, my headache continued to get worse, and when I woke up Tuesday morning, in addition to the headache, my stomach was bothering me as well. I thought it was best I did not go to work on Tuesday, which course caused a guilt trip for me since I absolutely despise taking sick days. In addition to my guilt for calling out sick, I began to question my future as far as employment goes, with a special emphasis on all those questions, I stated above. Again, I began to wonder if pushing myself to continue to work is in my best interest.

Needless to say, my mood over the past week has definitely been more down than up. I have also begun to realize that simple, mundane tasks and routines are either impossible for me, or else require so much of my strength and concentration that I am exhausted after completing the simplest task. My only hope at this point is that by returning back to work full-time and getting into a consistent routine will help to stabilize my mood and re-energize myself. This is my Bizarro Theory, if I may use another Seinfeld reference here. The Bizarro Theory states that up is down, black is white and night is day. In my world it seems that rest makes me weaker and activity makes me stronger (how bizarre, get it?), even though I am told that in order to combat the disease I should be resting instead of working. Only time will tell.

10 comments:

  1. damn dude, don't know what to say!! f'n sux!!!

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  2. How about delegating some responsibilities...like "Hey, I'll spring for donuts if someone can go grab them for me!"
    You knew when it was time to grab the Senior C Scooter in the grocery store ;) You'll know when it's time for the other things as well. You're ability to keep on keepin on amazes me...and no, that last part was not sarcasm.

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  3. you and the girls are always in my thoughts and prayers...xo

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  4. Hang in there Darin, you're not alone!

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  5. Hope that you're having a better day today!
    :)

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  6. Well if it makes you feel any better, I enjoyed the donunts!!! And you certainly didn't let on how difficult that morning was for you...although I did catch the comment to convince us all to eat donuts... "if you had any idea what it took to get these donuts". Hang in there!

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  7. Well if it makes you feel any better, my chocolate donut hit the spot!!! And you certainly hid the fact that you had such a rough morning...although i did catch the comment to persuade us to eat the donuts, "If you only knew what it took to get these". Hang in there and thanks for the donuts!

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  8. Darin,

    You are the most courageous guy I know. Just be careful.
    Will your job let you do a part time schedule?

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  9. Is suckitude an adequate descriptor? I can't even begin to imagine how difficult it must be when taken for granted can't be, but you are a warrior. I know you will probably push the limits in making difficult choices, but they aren't right or wrong. They're just the right for right then. The way I see it, eventually you may give in a little because at the time it just makes sense. It's not giving up, just changing strategy.Strategies are plans; plans change. Listen to your gut. If it's even slightly smarter than my gut, it has a clue. If you a lay a curved Twizzler on it, your gut might even speak the answers you wish to hear. Not quite Yoda, but you never know.If they can make mouths happy, maybe minds and bodies too. -Claims about an potential healing powers of Twizzlers or any licorice candies, is solely of the sleep-deprived musing of an individual and has not been evaluated by the FDA, though maybe it should. Miss you. Hang in there. Figure out what decision you'll least likely regret 6 months from now, and go with it.

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  10. Have Pemberton let you work from home!!

    Work from home!
    That would be SWEEEEEEEEEEEET!

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