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.