Tuesday, September 28, 2004

“I see you. I see you. I see you.”

Words spoken to a young man in pain…in the world of fiction. Oh that fiction was reality. Or reality fiction.

My sister told me a few months ago that my parents were planning this big trip for their anniversary next year. They were going to invite our whole family to go to Colorado with them. If we all paid for the plane tickets, they would pick up the rest of the tab. [We haven’t had a vacation as a whole family in more than 20 years.]

Now, a few months later, my sister told me that they have changed their plans and are now planning to go to Jamaica. NOT that they have spoken of this to my brother, my step-sister, or myself yet.

Jamaica. A tropical paradise, right?

I cannot be in such heat. When I get too hot, I grow weak and disoriented. I sometimes faint.

Water, water, everywhere and not a drop for me.

The last time I was in a pool, I nearly drowned. I had only been diagnosed with multiple sclerosis for a year. I did not think how very many muscles you use in water or how quickly I could become fatigued. My niece, twelve at the time, had to rescue me because the cacophony of the indoor pool kept the lifeguards from hearing our cries for help. I was terrified.

A family vacation in a place that is too hot for me with water activities I could not participate in otherwise.

It hurts that my parents give no thought to my disease. They give no thought to my life or how very much I mask and I compensate for this disease.

Never mind the asthma. Never mind the arthritis.

They do not see me. They do not see me. They do not see me.

I know my heavenly Father does. I know I am seen. But I have not yet learned to let go of the longing for my family to see me…just once.

Wednesday, September 22, 2004

I could say that I have never been as frightened as I was earlier today, but I am not sure that a few of my asthma attacks were not as bad.

Perhaps the fear seems worse because of the knowledge of the reality of what could have happened…what could have happened because I live alone.

I ordered a pizza Monday. The day after Redskins games, Papa John’s has a fairly good special based on the number of touchdowns the Redskins get. Now, I do not want the Redskins to win any games, but I do hope they get at least two touchdowns. That way I can get a large chicken and extra cheese pizza for the bargain basement price of $8.99. I can stretch it into 4 meals, while still enjoying the fresh pizza the first night.

Today, for brunch, I heated up two slices of chicken pizza. Savoring the thought of what was to come, I sat down on the couch with my laptop on a TV tray and settled down to check in with work, surf, and watch a movie.

I thought staying home from work to concentrate on resting after yesterday’s ground breaking celebration might be just the ticket to sending this cold on its way.

But somehow…mid-way through the first piece…instead of swallowing the bite of pizza I took…I half inhaled it. I was choking and no one was around to help. Arms flailing around my neck, I try coughing it out. But it was not working. I coughed so hard I could feel the effort from the small of my back to my fingertips. The birds flew off their cage and started shrieking. Kashi ran in circles around me and started barking.

I reached for the phone, thinking to call 911 and knocked it behind the couch. I stood and started to make my way to the kitchen where the other phone was, but stars were shooting before my eyes and I didn’t think an ambulance would do me any good by the time it arrived. With tears streaming down my face and desperation making me tremble, I threw myself backwards against the doorway to the kitchen. After the third blow, the offending food flew out of my mouth and landed on the floor.

Asthma and choking do not go together very well, so I used the nebulizer to calm the coughing and wheezing I was still doing.

My dog, who will eat anything, absolutely anything, left the bite of pizza alone.

I had a glass of milk for dinner. I do not know when I will feel comfortable eating solid food by myself again.

Monday, September 20, 2004

I will start off by saying that yesterday, I...well...discovered a physiological reason for my less than stellar mood last week. It is no excuse, but I feel less like a letch and more like a real person having snapped at the president of my company twice.

I was a bit grumpy at my writing student's home on Saturday. The family had invited me for dinner and I sort of snipped at her father while he was cooking. The strange thing is that I know how very much he enjoys cooking an involved meal, using all five burners on his new stove and much chopping, mincing, stirring, and spicing. He works all week, is helping to raise five children, and is finishing up their home improvement project that has gone on for months. Therefore his time in the kitchen is a balm to his soul and a reward for his labors. Even if he were to cook liver and onions, I would enjoy being there for the evening because I was in the heart of a loving family, enjoying the fellowship of Christians, and sharing in the pleasure of watching the father/scientist/carpenter/chef relish his time among the pots and pans. Don't get me wrong...I would NOT eat the liver and onions...but I would still want to share the evening.

So...knowing that...why did I pick on her father as he cooked? His daughter had set my tastebuds to salivating with news of her father's plan to get out his Louisiana cookbook...especially after my red beans and rice disaster. Our meal? Shepherd's Pie. Granted it was a gourmet Shepard's Pie, one that truly took hours of skillful labor. But I was expecting jambalaya or something like that. I supposed I passively punished the chef for not meeting my expectations? I was snippy and disrespectful in front of his children.

Sunday's revelation made me feel a bit better, but not completely. I owe him an apology.

I also seemed to have run into a cold. Perhaps another reason for my weariness. I have been running a fever, enduring a sore throat, and coughing throughout the day. I slept a lot this weekend and napped this evening when I got home from work.

I had hoped to leave at 2:00 since I spent so much time last week working on tomorrow's event. But somehow 2:oo turned into 4:35. And I still had to go to Lowe's to pick up flowers for the display table settings.

Tomorrow I have to be there at 6:00 AM for the people setting up the tent.

Everything is printed. Everything is packed in my car. I CANNOT wait for this event--for five other egos and agendas while managing ours--to be OVER.

I will say that every day last week and again this morning, I listened to these really great sermons by John MacArthur on the disciples. Several times I was trying to take notes while driving (I know...not the best idea). I found myself looking forward to my commute just to heard the next part of the lesson. Shocking, eh? Me looking forward to my commute?

I enjoy most sermons based directly on scripture. Sermons that point out truth by looking at verses supporting other verses. Sermons that delve into the quotidian existence of the people, culture, and history of biblical times. Sermons that focus on the Lord's plans, purposes, and call to Christians rather than five steps to this or six ways to achieve this, focus on the "Thee" not the "me." Sermons where I have tasted meat that leaves me challenged to seek more, rather than milk that leaves a hollow feeling inside.

I have been praising God for the fodder of His Word this week. It never ceases to amaze me how fresh and how relevant those ancient words can be.

P.S. If you think this post is a mental or emotional rollercoaster ride (as I did when I just re-read it)...well then perhaps it is a reflection of where my head has been for a while! How wonderful it is that each day we have a whole new beginning.

Thursday, September 16, 2004

I forgot to mention that my leg gave way four times today. I feel as if I am flirting with disaster..of MS kind.

So, to be honest, my concern is for my witness and my heart, but it is also for my health. If I cannot work, I cannot support myself. Where will I be then?

And, frankly, I do not mind falling down at work as much as I am sure I will mind falling down at the ground breaking ceremony.

In this case, pride would surely goeth before a fall.
I ran and ran today and snapped at the president again. I am not much liking myself.

This whole "eventing" experience is rough. I cannot begin to imagine how it would be if I did this for a living...yet maybe it wouldn't be so bad because it would be all I concentrated on each day. I truly enjoy the challenge of writing in a completely new genre for me, but doing so does not offset all the other hassle.

I shudder to think about the fact that I have another event on October 28th after this one on next Tuesday. And the word "behind" would not even begin to characterize this one.

I am tired, grumpy, and tired. Saturday is looking really great to me, really great.

I did get the press release signed-off-on in house. I drafted the president's talking points. I arranged for balloons to mark the entrance. I created a tri-fold company brochure for one of our funders (As a new organization, they have no real collateral and need something for the event). I laid out the items for our press packet that I will need to print and stuff tomorrow. I did something else quite productive in the morning, but I am so tired I cannot remember what it was! Oh, well...at least I actually left the office just after six tonight!

Besides printing for a few hours tomorrow, I also need to create badges for all the speakers, our senior staff, and our board. We have upgraded from stick-on ones to clear plastic holders that hang around the neck. If I finish that tomorrow, I should be as ready as possible for Tuesday.

Somehow, I need to learn to set myself aside and allow God the victory even in event planning!

Wednesday, September 15, 2004

I feel like I ran a marathon...uphill...backwards!

The press release is drafted. Woohoo! Now I have to go about seeing how many people I didn't please trying to balance egos and agendas with our theme that the residents should get the credit for this revitalized community.

I braided my hair in three long braids. Then I wrapped one in a circle in the back of my head. I wrapped the second around the first. And finally I wrapped the third around the other two. I had this vision today of how cool my hair looked.

Well, I just looked in the mirror...and I've been sporting the hairdo of a ninety-year-old.


What I have learned about red beans and rice:

  1. It generally is not a good idea to use a mix for making red beans and rice.
  2. If the finished product is more white than red, you know you have a problem.
  3. Ideally, the rice and beans should be cooked separately at first.
  4. Adding spices and/or butter will not help "faux" red beans and rice taste authentic.
  5. Barley does not taste right in red beans and rice.
  6. Only make a large quantity of red beans and rice when you are confident of the results, because mediocre meals are not meant to be repeated for six days straight.

Tuesday, September 14, 2004

I asked my best friend to pray for me today. If any others of you pray, I would be appreciative.

I sort of...well, actually...I...uhm...how to say this? In a nutshell, I snapped at the president of our organization during a meeting today. I felt a bit bad, but was still being ruled by my emotions and reaction to the circumstances surrounding the event next week and another one that now has to be rescheduled.

She heaped coals of fire upon my head by stopping by my office after hours while I was still slaving away to see if I was alright.

I truly am convicted over the vagaries of my emotions and reactions of late. Why should I allow other people that kind of power over my life?

God does not give us a spirit of timidity, but one of power and love and discipline, so Timothy writes.

I have not been timid of late about my feelings, but neither have I been loving or disciplined and I certainly have not been powerful in obedience to turning the other cheek to those who might wish to strike me.

It is no comfort that I was invited to my first charity golf tournament. Mostly likely I will not be able to go on Friday with all the work left before the ground breaking...but I do not really deserve such pleasure just now.

I need to become a paragon of patience, tranquility, equanimity, flexibility, kindness, gentleness, and graciousness first.

According to Luke, all things are possible through Christ.

After today, I would say that there much work that Christ has to do in this area of my life.

I will say, however, that a stressful, ugly day was finished by playing scrabble on-line with my best friend from the couch (and then green chair).

It is not about...truly...what we deserve. It is about the lovingkindnesses of the Lord.

Monday, September 13, 2004

Seriously, sitting in the green chair, working on the computer while watching football is simply great. I am really enjoying both the freedom of being wireless and the increased productivity. Tonight I worked on an upcoming event at work, getting a jump on my day tomorrow while watching football.

Last night, also while watching football, I wrote my latest communications status report. I was able to log onto my work server, pull up the template I created for them, write it, and then send it to my boss for a meeting today.

I tried playing Spider, but I have yet to figure out how to use the "click" part of the touch screen with that game.

On another note, I know...I truly know...that if you try to please everyone, you generally end up pleasing no one. Yet I tried with this event at work and failed miserably. How do people in politics live through a day on the job, much less their careers? I apparently am not that great at juggling egos, agendas, and desires of four separate interested parties. I had the opportunity to both "rise-to-the-occasion" and "take the higher road," and I only managed to feebly rise and take the slightly higher route.

I have another event in just five weeks...another opportunity to balance egos and present solutions not problems.

Sometimes...it truly is easier said than done!

Saturday, September 11, 2004

Well, here I am...Sitting in the green chair!

Yes, you read that right! I am utilizing my new wireless environment to post here. It is way, way cool--no doubt about it.

I got the laptop on Wednesday, but did not get the router set up until last night.

This guy I have sort of dated (a consummate computer geek) said he would set it up on Thursday, but by the time we had dinner and purchased the wireless router he recommended, it was 9:30 which is apparently his bedtime. So he left, promising me that he would be there at my house, waiting for me, when I got home. "Just call me when you leave work," he said.

I did call. He was on his way back from Front Royal and said he would be at my house by 7:15. I got home at 6:34 and jumped on mowing the grass (and growing seed). Then I mowed my neighbor's front yard because the house has been sitting empty for nearly a year and a half, and I hate his yard advertising that fact.

Still no Thomas.

So I took a shower.

No Thomas. No phone call.

Well, I bought a house without a man, surely I can set up a wireless network without a house, eh?

The answer was "no" with the Motorola router Thomas had me buy. The new "g" model mostly does not work with Verizon DSL. This I found out after 2 and a half hours of tech support troubleshooting.

After waiting one day, I was not about to wait another. So, knowing Target closes at 10:00 PM and it was 9:52, I jumped in the car raced to the store. Fortunately, the customer service person did not insist I get another Motorola. I highly suspect I got a refund instead of an exchange because I arrived at the return counter at 9:58.

I then raced over to Walmart, hoping that it was open another hour because I know Walmart carried Linksys routers. It was. There was an entire shelf of "g" models. And I was back in my study by 10:38.

Another hour and a half of tech support, this time with Linksys support techs, I successfully hooked up the router and put in a passcode so people cannot jump on my new technological highway!

Wednesday night I consoled myself watching a movie in bed with my laptop since I couldn't blog from the green chair. I thought that was cool...this is equally so!

Wednesday, September 08, 2004

I encountered a veritable mystery tonight.

Somehow, someway...I managed to spend $117.00 at the grocery store and come home with mainly paper products, graham crackers (Keebler, never Nabisco), pink lemonade Gatorade (hard to find yet seems to quench my thirst when water does not after laboring in the yard), Cheerios (for Kashi), chocolate (for my desk at work to lure co-workers to my office and soften the blow on my edits), twizzlers (my boss's one weakness), milk, cherry cobbler mix, and a packet of shredded mozzarella cheese.

I virtually have nothing for meals.

What happened?

P.S. For the record, that whopping total did not include a single can (or bottle) of Dr Pepper.

Tuesday, September 07, 2004

A Dr Pepper day if ever there was one.

When I moved into my new office last Friday, I was supposed to have the phone and data lines moved as well. But, of course, the technician did not show up. But…I was told he would be here first thing this morning.

Well, first thing this morning actually means, in technician speak, late in the afternoon. I was without a phone and a computer most of the day. I did manage to sneak on someone else’s computer for a while, but it was so decrepit that every time I asked it to do something, it paused to think for several minutes. Slow would not even begin to define this processor.

The call for Dr. Pepper came with trying to juggle last minute planning for two different events in two different counties with two sets of press packets, two sets of speakers, two sets of vendors, two sets of invitations, two sets of mailing lists…well, I could go on. But then I also was notified that two different grants are due tomorrow (I am supposed to have ADVANCED notice) and both of them needed a final review/edit. And four different partners of ours in the past two days have asked us to apply for awards on four different properties from four different agencies/institutions.

EVERYONE needed something from me and I was hard pressed to help anyone.

I had only a few minutes in my office today…not enough time to enjoy…to savor my new haven.

I suppose that I should be thankful…not for the helplessness I felt…but that I was needed at my job today.

Still, popping the can on the Dr Pepper tonight was such a wonderful feeling.

Monday, September 06, 2004

Yesterday I had a great evening. I sat in Starbucks (no…I have not yet succumbed to the coffee craze…I had the strawberries and cream drink) for a couple of hours with two really smart people. Talking. Thinking. Learning.

One was a woman from India who is here in the States studying engineering and other sorts of stuff I do not understand. What I did understand is that she is burdened by the poverty in her country and desires to do something, anything to help.

Her vision? Water. She has a vision of building a house on a piece of land she owns to provide a home for her mother and older sister. There she plans to begin working on providing better water source to a nearby village, where she and her family could also do volunteer work.

It matters not that as a woman trying to do business in a corrupt place her life may very well be forfeit. It matters not to her because she would not count her life worth living if she merely chose to life a life of relatively luxury here in the states while her countrymen were suffering. A noble vision she has.

Though, as a Hindu, she believes that she has another life to move on to if she dies. But does that make her decision any less noble?

I admire her vision and drive and intellect. I admire her willingness to do something, anything, in the face of such opposition. Yet I am saddened because I do not believe in reincarnation. I would hate to see her life spilt out at the hands of those who would be against her simply for her gender or because they were threatened by her unwillingness to either give or receive bribes or to take advantage of her countrymen in supplying water. Not when she has no relationship with Christ. Not when her future is of eternal death…as I see it.

Yet fighting that emotion, I still reveled in time spent truly discussing the largeness of life…. It most certainly was an enjoyable evening.

After she left, I went to my friend’s place for a bit more conversation and such. So there I was, just after midnight, sated with fellowship and a pleasurable evening. My friend walked me back to my car. But just as I stepped between my car and another I felt my right leg give way.

With MS, from time to time I simply lose the ability to use my legs. Most often it is when I try to get out of bed… and boom…they suddenly are not functioning. At those times, I usually sleep it off. I know that in a while, the function will be regained. So rather than railing against the situation, I try to just sleep until they are working again. But this time, for the first time, I was out and about…and trapped.

I had a shooting tingling pain in my lower back down to my right thigh. Every time I tried to bear weight, the pain sharpened and it felt as if my leg were simple gone. I could move it, but not bear weight. I stood there, trying to decide what to do and battling my anger over feeling as if the evening were spoiled. My friend had never experienced this with me. I felt stupid and helpless and angry and frightened.

With his help, I managed to get into the car and drove home with my left leg. Driving wasn’t difficult, but I risked whiplash with my breaking.

Once home, I wanted to just stay in the car until I could use my right leg again. But my friend insisted in getting me inside…even though I outweigh him considerably and doing so was a true labor of sacrifice. Shuffle my right leg forward…step with my left…lean on him…shuffle forward….step…try to suddenly become lighter…dread the steps…I was, understandably glad to collapse in my green chair (the favored leather wing back reclining chair with ball and claw feet).

My friend helped me get a little more comfortable in my clothes and brought me some water to set on the table next to me. He let Kashi outside, gave Fancy and Madison food and water and then covered their cage, set the alarm, and left.

Three hours later my leg was still not cooperating, I had to go to the bathroom in the worst way, and I realized that I had forgotten to ask my friend to put the phone within my reach. I had no way to call anyone for help.

I lay there for another three hours, trying to ignore the pain of my bladder and battling frustration. I was exhausted but unable to sleep. I felt trapped and alone. All I could do was think…and think….and think. What if this had happened at work? What would I have done then? Should I be thankful that I was at least with someone I knew?

I believe that God is sovereign, that there is a purpose to everything in this life... in my life as well. Therefore, for reasons I may not ever understand, there is a purpose to living with multiple sclerosis (and asthma and arthritis for that matter). Because I believe this, I don’t think that my anger is directed at God. For where would I be without my relationship with Christ? Where would I be without salvation, without unconditional love, without peace?

But can I truly be angry only at the disease?

All I want is a few times where everything is not so difficult. No asthma attacks. No bee stings. No car wrecks. No unemployment. No broken sewage pipes. No pain and stiffness. Remembering my name, how to spell, my age. Time spent with others where none of that infringes on the moment.

Is it wrong to want that?

Paul said he was content in all circumstances. Certainly he faced pain and suffering, trials and frustrations… prison…conflicts within the church…journey after journey where he faced opposition and battled disbelief even among his fellow Christians. Yet he was content in all circumstances.

I would have welcomed a measure of contentment last night.

Early this morning I was able to get around again. After relieving myself and letting Kashi outside again, I climbed the stairs to collapse in bed to finally rest for a while.

Friday, September 03, 2004

Well, I suppose that words cannot really express what the past five months have wrought in my life...but...then again...words are about all I ever really have.

God brought me to a truly wonderful job. I am the communications manager (and knowledge manager--but I have not yet gotten to that point) for a non-profit organization committed to developing vibrant communities through innovation and partnerships in the realm of affordable housing. They don't just develop properties...they preserve and revitalize them. Section 8 housing that is wired for broadband Internet access and a part of an electronic village with a community intranet populated with myriad software tools...have you heard of that? They also focus on developing resident driven community development programs that are focused on empowering the residents and creating links between the residential and business communities...youth...seniors...career and skill enhancement...community empowerment...all free.

I ENJOY going to work. I work for a company that is doing good. I write, edit, and organize all day. I am overseeing the development of a new web site, new marketing collateral, communications policies, file structure, and logo, stationary, and communications style guides. And I will soon have a very cozy, very private corner office with two large windows on Connecticut Ave.

I have met members of the British parliament, two ambassadors, the mayor of DC, and other elected and Federal officials.

Last week, the Director of Fannie Mae Northern Virginia Partnership Office sent me a basket of oatmeal raisin cookies as an apology (of course doing so was my very brazen suggestion).

Still...in the past five months, I have had two bad mammograms, totaled my car, had my insurance canceled (one payout and 21 years of driving well down the drain), been stung by a bee three times, had to spend over 10K replacing the sewage pipes in my yard, four weeks restoring the yard and the landscaping that was ripped out, fainted many times with no clear reason, oh...and a few more trials...

But...my best friend had a daughter...a beautiful gift from God. Both are doing well. I finally have an automatic car which is MUCH easier to drive when I am not feeling well or have weakened legs from the MS. I am on a trial medicine (dosage of statin) for MS. Kashi is well. Fancy has had five clutches of eggs (she hasn't learned how to build a nest yet, so the eggs don't hatch).

And did I mention the yard is finally back together...20 bags of mulch...40 bags of topsoil...five bags of gravel...moving 35 wheelbarrow loads of clay...digging up 20 plants...digging new holes for 20 plants...and watering and watering and watering the grass seed that the birds seem to be enjoying...

I am resting this weekend.