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Forward, introduction, permalinks, and Table of Contents available at: MS Diaries: Table of Contents
October 07
The best walk I’ve had since the spasm began in January 2003. I went for a half-hour walk without a cane, and did quite well thank you so much Agnes. I’ve had 2 and a half tokes today (video 32:15), and it’s already 7 at night. AWESOMENESS! Something to celebrate Thanksgiving with! I love it that my body is healing.
October 08
The best walk up to date. I found that I was able to walk Maya with total ease tonight, up and down under the skytrain line. Bravo Agnes.
October 10
These days, I find the mind is really fucking up with my reality. I’m also scared about the retina damage the optometrist found a few weeks back. I’ll be seeing my doctor tomorrow about it, and grabbing a referral.
Oh, man. I had a dream I was rollerblading. It was lovely to feel the movement of the skates on pavement!
October 14
Best day so far. Met up with Fred at Starbucks, and he walked me home. I walked so well without my cane! A few glitches, but Agnes (my body) is doing a mighty fine job carrying Susan.
I met with Ed for coffee at the usual Tim Horton’s. I didn’t have my cane with me, but I was able to walk with Ed after our coffee for a short bit to Chapters, and then headed to the skytrain. When I arrived home, I took Maya for a walk, and met Frank heading to Starbucks. He bought me coffee. I’ll probably run into him soon. My walk home was glorious. Of course I was caneless, and I hardly had to concentrate, there was no pain, and the movements (after my joint of course over coffee) especially above and beneath the knees were fluid for awhile, and the rusty jarring movements in the knees were ‘smoothed over and oiled down’. Periods of accurate balance and fluid motion seem to be lengthening in duration, and I am proud of Agnes. Bravo my fine woman!!!!
Hello Hello
I went for a small walk this morning. The best walk so far! Ran into Frank, and we sat and chatted for an hour. I’ve been studying up for my women’s course. Interesting readings!
October 27
I went for a small walk with Maya to Starbucks. The best walk up to date. Ran into Christi on the way home. Had to reinforce the idea that I wasn’t feeling much better, which was a white lie. I didn’t want to gloat. I toned down on the remission, and point out to her that I am still sick. It would be a waste of time for me to try and convince this woman.
October 30
Had the strongest walk by far. I am quite impressed with Agnes. In the morning I was stiff, but by the early afternoon, the ‘choppy’ movement in my upper thighs that are carrying the lower legs eased a bit so my walking was the smoothest so far. I returned from the coffee shop, and felt so good that I took Maya for a walk as soon as I stepped through Alex’s door. As sheer luck/karma goes, I stepped into a fresh mound of dog shit, and didn’t realize it until a half-hour later - shit stuck to the sole of my boot and ingrained in the grooves. It took me a good 20 minutes to clean up my right boot. Too gross, and I’m wincing at even the thought that it ‘was on me for 20 minutes’. Yuck. Alex and I are heading out in the car to take care of some bill payments etc. Sunny gorgeous day!
November 02
I am depressed at the moment. The realization hit me, whether real or semi-real, that I am running or operating my wheelchair on a hamster wheel... It’s a big fucking hamster wheel that is going nowhere. It remains static and enclosed, suffocating my every movement and mere existence. Sometimes I just despise life, like a sour friend, that constantly disappoints and falls short of the expectation. I had so many dreams in my life, but not this existence. This existence, if I knew that I would be living it... I don’t know if I would’ve bothered living. And by gum, I had a choice. When I swallowed those retched phenobarbs, I could have ended it all quite easily. Instead, I chickened out. I noticed a picture of Krsna on the wall, and panicked. The quick reaction response was a gut-wrenching “oh man, you’re going to ask me why?”. Damn it all. And when I woke up with the tubes down my throat, my immediate thought was ‘ah, fuck, I’m alive’. I was not happy at all to be alive. Being alive assured that I would suffer more, and I didn’t want to. Not the life, but the suffering. Begone you wretched suffering!
It seems that everyone is suffering this fucked-up existence.
I’m watching a beautiful (funny) episode on Frasier tonight. Just hilarious!
Asking Alex to supplement his complement on singing the words ‘Susan segee, Susan govet, Susan Kockangulheet’ with the word ‘beautiful’, Alex looked me in the eye with that serious, yet tender look “I wouldn’t be beside you if I didn’t think you were attractive”... I don’t recall whether he used the word attractive or a thrill. Oh man, I almost deleted this last entry. It’s funny how when words are creatively written down, there is this attachment that develops to this piece, almost like a miniature painting. Back to Alex words, he started singing ‘beautiful sege, beautiful gove, beautiful kockangulheet’. I like that. He added an assurance by stroking my back softly. Mmmm. I like that. He didn’t scold me for screeching (low voice) while using the bathroom. I hollered SHIIIIIITTTT, and punctuated the word with a loud guttural ‘aaaaaaahhhhhhhhhhhhh’.
I’m cold again... be back
to be continued...
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Forward, introduction, permalinks, and Table of Contents available at: MS Diaries: Table of Contents
Aug 25
I haven’t walked with purpose for two days. Yesterday was just awful... I had several crying fits and just felt plain miserable. The body pain is amplified by every miserable haunting thought, and I just want to avoid the world and hibernate.
My body continues to have issues - I feel that I have gained strength, but the balance is still quite damaged. I told Alex’s doctor that I didn’t enjoy walking, even though I could. He just smiled ear to ear when I gave Alex a hug in his office... he was commenting on becoming almost as short as I, and my commentary was that “you fit me, and remember, you’ve gained weight since last year:” Alex have spent the last week or two in each others company. He doesn’t seem to want to do his usual drinking/evening at the hillbillies. One of them must have pissed him off.
September 03/2007
Alex and I have been planning to go to Kamloops for the past 3 months.
September 15
Ah, well. I’m riding high. For the past 12 hours, my body has been operating smoother than it has since I got sick. Awesome. I went for a small walk without my cane to the local coffee shop, and later went for a small walk with Maya along the banks of the Fraser River. Alex and I sat and watched a beautiful sunset. I’m simply amazed. I have been in a plateau of sorts for the last few months... actually dips in the improvement of movements, strength and balance. Today was the first day since this recent plateau that I’ve witnessed and felt improvement in my body. God bless this body.
September 19
I had a few days there of a top level of walking, but the last two days I’ve been using the cane and a tad unsteady... up and down, up and down. I had sharp pangs of pain and exits points in my inner right thigh, next to the pelvic area, and near my right scapula, the tender dip on my right shoulder.
I’ve been busy with visiting Ann, Terry, I saw Val today at the BWSS, and I’m tired. I have put out a lot. My bowels have returned to a healthier state than before, during and after my visit to Kamloops. Gawd, the gut pains were constant and irritating. I had to hold my lower belly at times to relieve the discomfort.
Sep 21
Yesterday was awful. Socially I mean. First off, I decide to wait in the car while Alex goes to a bank machine to withdraw money for me. The machine eats up my card. Alex comes out to the car and asks me to come into the bank with him. A female and male clerk attend to us... no more than 23-24 in age. I am handed a new card to sign, and the young man scolds me with a comment that ‘You know that there should only be one person withdrawing money with the card, yourself’. Alex quips that we regularly share bankcards and withdraw/deposit for one another, and that there should be no problem. My response is that I have difficulty walking and had been waiting in the car. The fellow responds ‘I would advise that you should give him (Alex) the power of attorney’. I am shocked and respond with a quiet but annoyed laugh, ‘No! I don’t need to’. I am just too shocked.
I sign the card and we walk out. Talking to Ann on the phone a few minutes later, she is insulted at the suggestion, and asked me why I didn’t blow, because she would have. My response is ‘because Alex was there’.
We buy a Tim Horton’s coffee near the river, and decide to visit our favourite log along the Fraser River. We watch an absolutely spectacular sunset, with Maya zoned out on the grass behind us. When the sun sinks low, and the autumn evening chill hits our bones, we decide to drop by a familiar and busy sushi restaurant. We hadn’t been there in a year, and we enjoyed a delicious fill with piping hot green tea. Mmmmm, warm the chilly bones. Upon finishing, I hear peals of laughter to the left and behind us. The laughter is forced and has a familiar ugly tone, saturated with something other than simple humour. The laughter is coming from a table of three women. They are laughing and making comments while looking at Alex and I. When they start pointing and all three stare back at me, my initial response is to stare back. I am totally surprised to realize that Alex and I are the object of their ridicule. I hadn’t had that feeling since high school, over 20 years ago. I hold a steady gaze for 2 or 3 minutes with all three of them. I finally mouth ‘pookoo mama baho’. I really don’t care if they understand, but I make it obvious that I’m onto them and think little of them. I feel like smacking the three of them. I know that it is pointless to involve Alex in the interaction, because as he once told me ‘people assume I’m a drug addict with my back, and I have learned not to care what they think’. If Alex wasn’t there, I would have gone to the table, and confronted them with a ‘go back to the filthy hole you crawled out of’. They finally get the hint and resort to giving me sidelong glances. This is the first time since high school that I have been treated in such a way.
September 23
Fall is descending, and it is nippy but beautiful out there.
I just had a wonderful breakfast... pork and vegetable with fried red onions... God, food tastes so delicious these days. Finnigan is jealous of the computers - Alex and I are typing away and looking at our respective screens.
Alex and I saw a gorgeous sunset yesterday... until Jack limped up. The guy has no tact, and then he has the lack of sensitivity to sit himself down and start yapping away about his own existence. Well, to demonstrate to Alex, I pushed the gluten-free diet on to Jack. Jack’s response was to react with hostility and walk off in a huff. He wrote me a nasty note this morning on the e-mail... commenting that my temper tantrums were ‘abominable’. Alex read it and laughed... I wasn’t even angry when I suggested the diet to Jack, and even laughed a bit after Jack walked to his truck. Jack’s comment that people gossiped about me and that ‘what they were saying was true’ I responded that I didn’t care. I suggested that he join them in the gossip. The level of support from the local community has been so minimal, I wrote that it was meaningless to me what ‘they’ thought of me. They were desperate to elevate themselves somehow by criticizing me. Isn’t that special! In response to his comment “you are too angry”, I agreed with him. I wrote, yes I am angry. This disease hit me at the prime of my life and I lost absolutely everything, and the society I live in oppresses me. Yes, anger is there. And I will add that there is nothing good or bad about my anger. It needs to be there for now. I’m grieving a huge loss, and so is Jack with his obsession with David. Objectifying his anger perhaps? I don’t know. I wrote to John to take care, and I appreciated his honesty. I hope he doesn’t bother Alex and I anymore when we sit at the Fraser, and I hope he doesn’t write. God, that would be nice.
October 01
Onward towards the drudgery of winter. Crap weather, cold feet, eternally gray skies... I’m tired, and it’s in the morning, 1 a.m. My walking today, without a cane and once around the mall, through Superstore and Save On was the best so far on my road through remission. Will talk tomorrow.
to be continued...
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Forward, introduction, permalinks, and Table of Contents available at: MS Diaries: Table of Contents
July eeew 12, 2007
I haven’t written in a month. What a month . I won’t write much, but wished to note that I’ve somewhat reached a plateau... my improvements in my health have super slowed, and it is almost alarming to me. I’m not used to this lack of improvement.
Anyway, saw Charlie, Frank and Fran at Starbucks today. Lovely, simply lovely out today, with temperature reaching 37, I commented to the group that the hole that I could feel and see. Last year, when I was in a chair, I commented to that I would’ve spent thousands to be able to walk at my current level of function. With my improvement in health, that ‘hole’ I believed that would be filled by the ability to walk, simply cannot by that, even the miracle of walking again. I realized yesterday that I was still unhappy. The hole was still unfilled and unsatisfied.
July 14
I have gone for two small walks today. Little improvements are slight, but I notice them from a few weeks back... Took a walk up 6th Street hill in New West... not too painful. I’ve taken to using a cane whenever I cross the street, but I tend to carry it on my shoulder when I am walking on the sidewalk. I still have to use the cane with oncoming foot traffic, and I have an easier time with hypersensitivity to sensation on my left side, and have an easier time maintaining balance and my strength is improving. People have been commenting how good and healthy I look. For me, the health is more important. God, I never want to end up in the ‘rolling prison’ again!!
July 19
I didn’t have a great day today. I’m feeling bendable and a little bit = a lot tired. Now chairs and tables are moving around trying for a bit of attention.
God bless
July 20
I am sitting here, in between episodes of Law and Order and Fraser. Alex calls them Law and Border, and Freezer. Funny duck of mine.
I have been feeling down these past few weeks. Today wasn’t great either. Walked up 6th in New West from the New West skytrain way up to 6th Ave. I was able to make it in 21 minutes. The downhill trek was a bit more difficult. I’ve been using my cane these past 2 months - simply because of the heat. I can’t trust that my body will remain consistent whenever I feel up for a walk. I’ve been in a plateau these past few weeks, and I know improvement in function is around the corner, but the process is slow. I have to remain hopeful that improvements will be made. I know my body can do amazing things when dealing with this illness of mine. I’m tired.
July 23
My walking, strength, endurance, and balance have all been improving. However, today I went to buy a few beers for Alex in my wheelchair for the first time in a while.
Friday July 27, 2007
Best day walking so far - particularly down 6th Street from 6th Avenue -or vice versa. Can’t recall which angles what direction. I walked down with Dan. I was amazed how well I walked.
July 29
Today I was miserable all day. I even cried a bit in Pacific Pub... Alex was so kind. I told him I would be o.k., that I was just being a toddler, realizing that I wasn’t king of my life. Breakthrough in MS research - a gene that indicates that MS is an autoimmune disease. Bravo, scientists.
July 30
Best day so far. I walked from my doctor's office all the way down to New Westminster skytrain. Had a coffee and rest at Starbucks, headed down and ran into Dan and Max along the way. Dan walked with me, and he was impressed. I reminded him that I was still sick. I made a point with Dan that I was afraid to stop on the walk down 6th - that I needed to keep going to prevent my knees from locking... Yet, when his phone rang at the crosswalk at Royal Avenue, he stopped. I continued on for fear of having my knees lock halfway through the crosswalk. I stopped when I reached the other side, and noticed Dan was still on the other side. I called him on his cell phone, and barked at him to join me. He had the nerve to play games with me, that I had ‘just kept going’. All whiny, as if I had ‘left him behind’. Unbelievable, men like him are so egocentric. Then and there I realized I had made a good decision to not have Dan in my life. Get it through your thick head idiot! I’m sick! Any sort of walking is a huge undertaking and an epic journey. Straight into Alex’s arms go I.
August 10
Oooh, eeeh, aaahhh. My release of negative energy. Last night was the best ‘walking’ segment so far. My mind is a battlefield. Depression, waves, hit me throughout the day. My loss of youth combined with the difficulty walking makes me quite unhappy. Even the simple deterioration of the density of my breasts. Who would’ve thought.
I have to report that the balance and strength and coordination are improving. Still lots of work to do though. Since buying the Toyota Corolla a few weeks ago, I haven’t had the opportunity to exercise much. Alex is in the mood to go places in the evening, and I have been spending more time in the day with him. Usually, we have been spending the evening, watching the sun set near the Fraser River. Beautiful and peaceful. No heavy foot traffic. We share a thermos of hot tea and brandy, enjoy our respective smokes, and cuddle and hold one another tightly. Alex is such a warm affectionate man, and I love him dearly.
August 18
Summer winding down to a close... Alex and I have spent the last three weeks, sitting on a log along the Fraser River banks, watching the sun sink into the horizon. Beautiful, with the gentle cool air brushing the skin like a soothing kiss.
This morning, I woke up at 6 am, and went for a coffee at the local Starbucks, and went for a short walk around the Save On Foods, library area. My walking is the best it has been since being struck down by MS.
I still feel godawful sick sometimes, and that keeps me in check. I don’t want to forget how bad it can get.
My gluten-free diet is a constancy in my life. I have never eaten better. :o) Thank God for that.
August 19
Eew. Summer is over - the cold is back again. Cold hands, cold feet, cold nipples. Constantly cold for 6-7 months. Yay
Aside from that reality, my walking was the best it has been in five years. It was smooth, regular, and effortless for about 2 hours. The best day so far.
Today, my GI tract was spasming, because the crap I just had were like concrete brown golf balls, painfully popping out of my ass. I even plugged Alex’s toilet with the collection, and he commented that they were like rocks. I’m half done, just taking a rest before my second round on the toilet. God, I absolutely hate this part of my reality.
Charlie mentioned that Gerry is contemplating palliative care at a local facility. He has been deteriorating and falling more out of his chair, yet he remains defiant that he won’t move until he can no longer feed himself.
August 21
A little bit better today with walking - unsteady and out of balance at times, but I’m able to recover. I arrived home exhausted though, after putting in over 2 hours of walking around the mall, Save On and Metrotown. I heated up some delicious chicken soup Alex made 2 days ago. Positively delicious.
I hate being sick. Tired of it, and I wish I had a new body. I had a PAP test yesterday - my Doctor was confident that all was well with my breasts and reproductive system. Perimenopause is what I’m experiencing he says.
August 23
Best walking yet. Fran picked me up and we zoomed to Highgate Starbucks. Not terribly exciting there, but I was able to walk without a cane... even up and down a flight of stairs! It didn’t take much effort!! Yay! I feel awesome about this part of my life.
to be continued...
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Forward, introduction, permalinks, and Table of Contents available at: MS Diaries: Table of Contents
June 06, 2007
Talk about a glorious time...My walking has never been better since my attack. I was able to walk, with relative ease up from New Westminster Skytrain up to 6th Street, had a coffee, and walked all the way down. Yay!! I couldn’t believe it. Like I’ve been given a present. Told Fran at coffee today. Told my mother, and I’m still kind of enjoying the experience of ‘relative ease of walking’. The pain is reasonable, the balance pretty good, and my hypersensitivity on my left side is tolerable. My coordination of movements between muscle groups and timing between different body parts is ‘reconnecting’. M jigsaw pieces body parts are more normalized than it has been since my MS attack in 2003. I am buzzing, I cannot believe my good fortune, and find myself thanking God quite a bit. :o)
June 11
For the moment, I’m not bad today. I have had ups and downs these last few days, both physical and mental. It’s not easy being poor either...the boredom drives me crazy sometimes.
My walking is improving slowly. Balance is the most fucked up thing right now.
I also met a fellow gluten-free trooper named Steve. I’ll mention that later too!
June 13
I better send my father’s day card. I keep forgetting little things like that.
My walking is smoother every day. Balance is still a challenge, but the communication between the different body parts work in improving unison. It’s not as it was prior to the attack, but certainly a marked improvement. For the last 6 months, people have responded to my change in health with comments of ‘you look so much better’, ‘you look great’, ‘you’re in wonderful shape’. Just today, a fellow I’ve known in New Westminster for the last 6 years, asked me out. He commented that he always thought I was sexy, and that I had beautiful eyes. He added that I was hot, and bought me a Tim Horton’s coffee. It made my day. I took his complement, but added I didn’t know what he was talking about. I’m not used to looking sexy. I’ve been so traumatized by this health of mine. Thinking sexy thoughts... mmmmm.
My period ended yesterday - started on June 6th - I should start recording the ‘timing’. Anyway, Alex is waiting, and I need to rest. Saw a bunch of people today, and walked down to New West ST station from 6th and 6th. I know, I’m crazy. It helps to be one and know others who are just as mad. Hee hee hee. I gotta go, my fatigue is creeping up on me. 1:13 am...yeesh, logical to feel tired.
June 24
I’ve been busy it appears. Amazing how quickly time is completed, done, and discarded. It’s 5 am, and I am still up with Alex next to me at his own computer. I have much to talk about. I’ve taken several trips up 6th st at new west. Three times last week. Accomplishment, walking up and down without a can.
For others, this seems miraculous. I simply find it interesting. Don’t know what to expect.
It is a Sunday, 5 pm. It’s hailing outside and lightening flashing. Alex commented that storms like this in Vancouver are usually followed by sunshine. Hopefully.
Went for a coffee this morning and ran into Collin at Starbucks. Talked for nearly two hours. Sweet fellow is having his first day off in six days, and was recovering from a night of partying with his wife. He made a comment that I was walking better than ever. Knock on wood.
Have an interview with an acting agency on Tuesday. Will it lead to something… I can’t wait to see... :o)
June 29
First time I walked down 6th Street without too much pain. I still waver, and look like a marionette doll. But the pain is reduced, and I have more muscle strength, and have better control over my body parts.
The security guard up the hill, a giant of a man I’ve known for 5 years or so, commented that I had ‘gained weight’, and that my muscles were returning and that I had ‘filled out’. COOL. Only too cool, people are noticing my improved health. Beyond words for me to explain.
to be continued...
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