When days are numbered…

I don’t know what exactly prompted this writing, but whatever it is, I know in my heart that it is towards a good end. I just felt euphoric and wistful at the same time. Maybe I’m bipolar (but then I can’t be feeling opposites at the same time, I suppose). The bottom-line is that I feel my days are somewhat numbered. Well, I’m not planning to give up at all. It’s just an instinct. One of those morbid moments in my exceedingly exhausting life. I have a surge of emotions running through me, and I feel compelled to share. Not much has happened in the last few days that was out of the ordinary. I just feel I take in way more than I was ever meant to. I remember looks, smiles, words, laughs, nightmares, visions, flashes more than I ever have before. Something must be happening to me, and this (writing) strikes me as a way to make sense of this erratic universe of mine – the universe in which you hold a very dear place.  

I’m extremely weepy these days. I cry (at least internally) when I see a beautiful blossom. I cry when I see pain, I cry when anyone is helpless… I cry when I write… like now. I feel there’s so much I can do for this world. Yours and mine. And that I have no way of articulating anything. I feel crippled and voiceless. I feel inadequate. I feel I was not accomplishing what I was sent here for… this earth… this universe. I’m the smiling guy. I’m also the weeping guy. I can feel… a lot more than one can ever imagine.

I’m lucky, though. I feel blessed. I feel fortunate that I have so much less pain than most of the world. I feel unjustly situated. I feel undeserving. That’s what prompts this note. I sometimes wish I could watch my life like a movie. I might get a better perspective then. I’m hopeful, but every single day is slightly worse than the one before. So I pray, and I know lots of people are praying for me. I wish I could do much more. I feel I can only do one hundredth of what I could do. Isn’ t that always the case though?

I went to Stevenson in the morning, even though dragging myself to the bathroom was like a wild parade. I couldn’t see that well, so I didn’t mingle much. I just stayed where I was, crippled by immobility,blurred vision, and inarticulate speech. I had to be there to help my online students if they needed help. Only one student came today, and her eyes when I told her that she only had minimal revisions to get an “A” in the class validated my existence. Ah, the joy of little things. I realized when I was at Stevenson, how imperfect I was. I realized that I was gradually slipping from my overly gregarious self. I felt selfish. I felt like a burden on the world. I felt this. I did. I did.

When I came back to my apartment, earlier than I should have, because I felt nauseous and sick and heavy-hearted, there was a package waiting for me. It was from Em – Emily. Ah, I cried when I opened it, Em. It was a gorgeous portrait that she had painted. Emily is a phenomenal artist. On the back of this beautiful painting, she had written, “I pray for you, everyday.” I have this gorgeous painting on my mantelpiece that doesn’t work. It reminded me of the beauty of this world. The talent of this world. The goodness of this world.

I’m a melancholic. When I was about sixteen, I wrote a poem called “As the leaves fall.” I remember it word for word:

In an autumn eve

The leaves fall

To the golden earth

One by one.

From an open frame

I watch entranced

When memories roll

As the leaves fall.

A solitary bird

On a leafless branch

Sings a strain

That makes me sad.

She complains

Of the earless wind

That robs her friends

As the leaves fall.

I realize

The hopeless hope

That makes us sad

Day by day

When all we know

Is an aimless end

As the leaves that fall

As the leaves that fall…

I feel like this now. Maybe it’s the blues of a semester ending. A year ending, really. I want to gather the rosebuds while I may… there’s no time to lose. I wish sometimes, though, that I could love the whole world. I’m so imperfect, though. I’m so so imperfect. I want to be good. I want to see someone smile. Maybe it’s goodness induced by impending closure… Maybe. I believe, for it makes sense to me. And you can believe what makes sense to you, and I will love you with my whole heart, not just a part. When I go to bed, I think of my blessings. I think of ways I could be a better human being. Ways I could make this a better world. And I cry a little.

I want to hug every stranger who opens the door for me

It was an eventful day, to say the least. Maybe I don’t say how hard life is for me, maybe I can hardly ever get rid of my permanent smile, maybe it pays to be selfish sometimes, but whatever the case is, utterly selfish and insensitive behavior and words affect me really badly. I try really hard to seem normal, but my life is very far from it. I struggle a lot. To walk, to talk, to write, to remember, to swallow… You get the picture. It’s amazing how one person can completely ruin my day, but I will not go into detail. My day was a very challenging one, but on the other hand, I got a lot done and a few kind words from friends and strangers redeemed this day for me.

I really overdid today. I woke up to another day. The present is a gift, they say. Mine must have been purchased at the Dollar Store!!!! No complaints… no complaints… I smile as I write, so don’t feel bad for me. I made my usual PB&J sandwich, got ready, and took the Blue Line to campus. I worked for two hours in the library and walked over to the Counseling Center for my group therapy appointment. As I was struggling to open doors, strangers came back from where they were going and opened the door for me and held it open until I passed. This happened three times today. I say “thank you,” of course, but I’m sure they don’t have the slightest idea how that little deed of kindness brightened my day. So I made it to the group session.  It was good to know that others have problems, too. Not that I revel in others having problems, but it helps me to think less of mine. After group, I took two buses to the “Y.” I made it, but in order to be back on campus in time for my class, I had to come out of the pool in 20 minutes. I quickly changed into my swim gear and plunged into the pool. I did not take any breaks today, and I did 8 laps. This was an achievement for me. When I got out of the pool, I was terribly disabled. It’s always like that, but I had to change super fast to catch the next bus, so I struggled awfully hard to get dressed and hurry (in my own humble way) to the bus stop. I made it!!!!

I went to the English department and had my PB&J sandwich. I’m so glad that Jan was there. I was upset, and I’m sure Jan could guess even if I didn’t tell her, but I did. I had to get some of it out.

I had Joe’s class today, and it was good. I was in a different world, though. I was so very hurt today, but oh well, some people can’t see beyond themselves. It makes me really sad. Oh well, I say. I hope I will never be insensitive to those who are visibly challenged. I sat through my Seminar and left a little early as I had to catch the bus. I’m glad it was my favorite bus driver tonight. He always says, “Hey buddy!” It’s such a small thing, but it brightens my world. I remember these kind words when it gets hard to cope, when I reflect on my day, when I pray… Blessed are the pure of heart, and blessed, indeed, are those who can see beyond themselves.

Chocolate-covered Pecan

I have not posted a note for quite a while, so here I am. It’s been a little hectic, but I’m still managing. Oh, I swim everyday now for an hour or so, and it definitely helps me. When I come out of the pool, I feel extremely disabled, but in a while I recover. The ankle braces help, and even more than that what helps is “people;” people who truly care. I feel blessed in being able to identify people who’d stick by me when the going gets tough. Some, unfortunately, simply live by the phrase, “out of sight, out of mind.” Sad, it is. Really sad… I will not dwell on that, though.

Life is good when the ones who stick by you are the ones who truly care. So today as usual  I went to the “Y” to swim. Sandy, the receptionist, never fails to greet me with a vibrant smile and a “THERE he is!!” I love that! It’s a joy to see positive, smiling people. I swam about 12 laps today. It was great as I had the pool almost entirely to myself. It can be a little scary since the doctor told me that I’m at risk of drowning, but there’s a lifeguard, so it’s all good. On coming back from the “Y”, Sandy offered me chocolate covered nuts. I took a pecan, and it was yummy. More than the chocolate covered pecan, though, I was moved by the gesture. Blessed are the pure of heart. I firmly believe that.

It was good to see Jan, Irene and Nancy as always. My class was great. I was able to read the entire piece I wrote even though my pronunciation is horrid now. I find it hard to pronounce certain words. My classmates were very understanding, and as always, Kass was a strength. When I came back home I went through the comments my peers had given me. They were simply beautiful. I read them over and over… so positive, encouraging, and just beautiful. I can’t thank them enough.

Heading home, I bumped into Angela; we are both very excited about the diversity week. I reminded her about a microphone, so hopefully, we’d be able to get one arranged. I’m nervous, but more excited than nervous. Life is good… hard, yes; no pain, no gain, right? I never wanted any gain, though. Through the whole day, I remembered that chocolate covered pecan and the love with which it was offered. Little things, little things. They win the day for me.

A new lease of life

It’s time for a good note! Well, it’s close to ten years of having MS. It’s here to stay, of course, but we do what we can. It was a long and lethargic morning, but I managed to go to campus. I had thought that Irene’s reading was today. Ops! It’s next week. It was good, though, to see some friendly faces. I’m like a fixture in the English Department. I checked my email and managed to write to my students while there. I knew that today was the day that I was to get my ankle braces. I was somewhat excited, but I did not entertain thoughts of some magical transformation. MS is a cruel beast, after all! Oh, in the morning I had some kind of protein shake. It really filled me up and has only 250 calories. I didn’t have lunch. I did have some trail mix, though. I have become such a calorie counting freak!

Back home I took a nap and tried to clean a little upon waking up. John was to take me to Peter’s Orthopedics to get the ankle braces. He was there as promised, of course, and we headed to Peter’s Orthopedic. It was a bleak day. The sky was gray, and the wind was chilly. Mid forties is not that bad though. I like it fairly cold, anyways!

John dropped me off, and I waited in the waiting area for Tracy, my compassionate ankle brace guy with very blue eyes.  The friendly receptionist then took me in and asked me to wait for Tracy in room three. He came after tapping on the door gently; he had the braces in his hand. Hmmmm… I wondered how those skeletal structures were going to help me walk. Tracy helped me get the braces into my shoes and asked me to try walking in them. Oh, and Tracy is a guy, by the way. A very friendly, articulate man with azure eyes. So I started walking…

Holy cow! I felt like floating. I could not believe that those little inserts could help me walk with 20% of the effort I used to put into walking. Wow! Amazing!!! Tracy was so thrilled that the braces helped me walk better. I did look fairly robotic in those, but at this stage of the game, who cares!?!?!?! So I got braces today, and with them, a new lease of life. I can stand better; they support my posture and gait. I’m not used to feeling this good. It’s been several years. I hope this feeling remains. This comfort. This ease.

The first thing I did after returning home was writing a facebook status. I got quite a few inspiring comments. Ah, I love good people. They make it all worthwhile. I feel so light after so many years. It’s not like my MS has gone away, but I do sincerely feel better. I feel I can make something out of this life. I wasn’t that sure this morning. I’m thankful to Tim… John… Jan… Tracy… and everyone responsible for my new lease of life. I just hope this is not some dream. I’m just not used to it.

Tears in Heaven…

As I write this tonight, I’m overcome by a surge of emotions that I don't know how to even begin to express. I thought I was a writer, but I realize that human goodness is difficult to articulate in limited words. Language cannot, as we discussed in many classes, express the length and breadth of human experience. It can only scratch on the surface. This is the best I can do tonight, my dear dear friend, Stacy. I was really crying when I left that message on your phone. I’m deeply touched. I’m moved beyond limited words. Oh, but they are good tears. I will return to this blessed part of my day later. Let me go from the beginning. It was a great day, despite my failing and ailing body. Thank God we are more than our bodies. They fail, more often than not. I’m glad that I can feel joy still. I cry very easily these days. I’m moved deeply, to my very fibers.

In the morning, after meeting with a student, Tim (Jan’s husband) took me to Peter’s Orthopedic. I’m simply overwhelmed by the compassion and goodness of people in my life. Oh, what would I ever be without these beautiful people? Peter’s Orthopedic was full of friendly people, too. They gave me good news. They told me that ankle braces will really help my walking. I have what is called a “drop foot,” so some support would definitely help! Tim (after reminding me repeatedly that I should eat before class!!!!! Ha ha ha!) dropped me at the Bone center. I met with a counselor regarding group therapy. She was a wonderful lady, and I’m excited about my group therapy session this Thursday! Oh, so I had some gummy something and chocolate milk for lunch J At the English department, I was able to, as always, see some wonderful people. I wish I could let everyone know how much they mean to me. I hope my eyes speak.

My Creative Writing Pedagogy class (with Joe) was an amazing experience. I cried a few times as I was deeply moved by some of the stories my classmates shared. It was an intensely cathartic hour and a half for everyone. I walked to the bus stop with Theresa, who graciously offered me a ride home. My mind was full, though, so I said I was going to CVS to buy a few things. At CVS, I bought a number of things I never needed (Cashews and chili cheese fritos!). Then I took the Blue Line home. As I was opening my door, I noticed there was a big box with my name on it on the step next to my door. Then I looked at the sender’s name, which read “Kastner.” I know only one Kastner in the whole world – my dear friend and former office mate at St. Bonaventure University, Stacy Kastner. I was excited to get the box, even though I had no idea what it contained.

                Then I opened it… as I took out item by item, my eyes welled and spilled over: chocolates, heart-shaped lemon cookies, lifesavers, tea, Thai noodles… the list goes on and on. I cried for a while and then I saw the card. It read, “I believe in mind over matter… I believe in the human spirit to prevail… I believe in miracles and blessings both great and small… I believe in possibilities… I believe that hurdles in life are meant to be jumped over, not as something to stop us…” And on the inside it said, “ I believe in you.” The flood gates opened then… they are still open… they will be for a while. I’m so grateful for the beauty that surrounds me, the goodness, the love. They keep me going… and I thank God for you. I have let go of my pride to run this race all by myself. Thank you for the love that nourishes me, that fortifies me, that protects me, that holds me up… it gives me tranquility amidst troubled waters… it makes me sleep like a baby.

Hail Mary!

Ugh it was a terribly slow day, and I didn’t even go to church! I was in a bit of a “giver-upper” kinda mood. Ummm I so hate when that happens, BUT as I type I’m pretty content with life. The best remedy for these bad days is to be among people who smile. People who care. People who are positive. I’m very thankful that my friend, Jessica came to pick me up and take me to the Coffeehouse. Bless her heart! It was a wonderfully productive time, and I got to see many friendly faces. I was so thrilled to see Angela and Julie there.

I read a lot and developed a sense of peace. I realize that I have to accept what life has dealt me. Molly was so right. It’s not easy by any means, but I still have some choices available. I can decide whether to eat or famish (I can see Jan, nodding! ;)) I can decide whether to wear jeans or shorts. I can decide whether to talk or hold my peace. I can decide whether to smile or frown. So in essence, I can still choose quite a bit, really. I should NOT complain. I will not. I won’t. I won’t. That’s not me. Someone told me once that I look hideous when I complain, and I believe that. I want to be beautiful, so I will smile. I will even sing your name (AMYYYYYYYYYYYY ;)).

Tomorrow, I intend to get a LOT done. Of course, I know I always have lofty dreams and expectations, but, maybe this is doable. I’m definitely going to try. At the Coffeeehouse I drank three cups of coffee, so I’m a little hyper right now. It’s a lot better than the crestfallen mood I was in earlier. In fact, I can type much faster as well when I’m hyper, and thoughts come like a rollercoaster! I know I will be up for a while, so maybe I can get some writing done, too.

Oh, life life life. These ups and downs are so unpredictable, but I know for sure that coffee and friends are a very good combination. Oh, and when we were at the Coffeehouse there was a raucous sound that resembled a crazy man trying to play drums or something. It lasted only a few minutes: it was HAIL coming down at a horrid pace! When we came out to leave, we saw pellets of hail! So very exciting, as I had never experienced hail before. I dread to imagine the sensation had I been outside!!!! J

I’m glad the day ended fairly well. I’m thankful for the good people in my life. I love the Beatitudes (TUDES as Jan and I call them). Blessed indeed are the pure of heart! J Going gone “goed”!!

Fresh snow of a pure pure white

As unrealistic as it sounds, I still make “to do” lists that remind me I have a lot to do. And miles to go before I sleep. And miles… My neighbors are very quiet now. I hope it’s not a momentary change in the vitriolic exchanges I hear every night. Maybe they realized that others need to live a little, too. Yes, I can still live a little. Ah, that reminds me of a song that I love: “You gotta laugh a little, cry a little, let your poor heart break a little. That’s the story of, that’s the glory of love.”

I still don’t quite understand why so many people think I’m brave. Well, I guess I still do what I can. I’m just clinging to a rotting excuse for a body, though. But one fine day, I will be as new as fresh snow. When I came out of my apartment, I smiled to myself, rejuvenated by pure white snow. Snow makes it hard for me to navigate, but a light snowfall lifts up my spirits and reminds me that someone up there is in control. It’s comforting. It’s liberating. Yeah, I still believe.

So I came to the library and worked almost four hours without a break on my online class. I posted all my students’ midterm grades, and I will email them individually to remind them that an online class is easy to fail. Alas! I hope no one fails.

I had a “mixed berry coffee cake” and some coffee to recover from bad papers. Well, most of them were good, though. I absolutely love the individual conferences I have with my online students at the end of the semester. It’s very hectic for me to talk so much, but meeting my students for the first time is still a wonderful experience. Most of them have delightful personalities. Alas, some of them make me re-think about the grades I have given them. Bad bad bad. I’m so easily persuaded. As long as they learn… as long as they learn…

I don’t feel too bad today. When I was walking over to Einstein Brothers to get coffee, I had an epiphany: my world is growing ever so smaller in so many ways. I’m terribly near-sighted. Until you are within reach, I don’t even know who you are. I also realized that my circle of friends (I do believe I have a large one) is dwindling. Maybe it’s not a bad thing, though. Can I be burning bridges by not being the first person to initiate contact? Maybe those bridges never really existed…  that’s my epiphany, the realization.

I still have a lot to do. When I go home today, I will work on some of them. I have tomorrow, too. But then, tomorrow is not a reality. It’s only a possibility, and I have absolutely no complaints about that J