Not easy.

I have spent a lifetime helping others with no expectations. I have not been the centre of attention. In spite of how extroverted I appear to be, I am not comfortable being the centre of attention. I started doing the family laundry at the age of 15. I would help my mother vacuum. Wash the windows every spring. We had storm windows which meant you were washing two sets of windows. That was just the way it was.

My parents held firesides every Wednesday night. Firesides are events held in Baha’i houses where we tell non-Baha’is about the Faith. A lot of people would show up for these evenings. We would end up feeding a lot of the students, providing dinner for about 20 people. Fetneh and I had supporting roles. She would help with the cooking. We would set the table, clear the table, wash the dishes and help get things ready for the coffee/tea that would be served at the end. Mom would inevitably make her patented banana cake covered with fresh cream and more bananas. Yum.

At the end of the evening, I would end up driving a bunch of people home. Mom would insist. It was too cold. For those of you who have not experienced a Montreal winter, I suggest you go there for a vaction anytime n January or February. It will forever change your notions of what cold really is. In the days before Global Warming, we would regularly see winter temperatures of 30 below zero last through the whole winter (at those temperatures, it matters little if it is Farenheit or Celsius). And if it was not cold, it was warm enough to snow, which you had to shovel before it froze as temperatures dipped again. Montreal would average 150 inches of snow a year.

We went to Swaziland when my father died in 1999. We had to pack up his stuff. ShooShoo was there with me. We were going out to see some friends one night. I was dressed in shorts and a Hawaiian shirt. The locals were horrified. You can’t go out like that, they said. I did not recall any African rites that stopped me from wearing either shorts or Hawaaian shirts. No, no, they said, too cold. It will be 10 Celsius tonight. Yeah, OK. Call me when it gets to minus 20. The guy looked at me. I thought maybe I spoke too fast, but no. He looked at me and said he cannot even imagine that sort of cold. True enough. Until you live through a Montreal winter, you have no idea what cold is. Though I am told that Winnipeg might beat Montreal.

My life has been nothing but not being the centre of attention and looking after others. I am no angel, mind. People have called me all sorts of things. I am painfully aware of my shortcomings.

Going from looking after people to being looked after is very hard. No, that’s not strong enough. Excrutiatingly hard. Having to ask Devin for a glass of water because I could not get up to get my own. To watch Leslie clean the house and not be able to help. To not be able to go shopping for food. To have to rely on someone, anyone for the least of things. Not good. And not easy to get accustomed to.I would often escape to the bedroom with the pretense of being tired.

Things have improved though. I am a lot stronger. Getting stronger on a daily basis. Vacuumed the house the other day. Went down to the basement and brought up the vacuum cleaner and did the whole house, returning the cleaner to the basement. I was tired, but it was a good tired, and I was fully prepared to pay the price. I am driving now, which means I can go shopping. I just have to be really careful to not buy too much because the bags become too heavy. Multiple trips are de rigueur. Things are improving.

The guilt that comes from not being able to do things is almost impossible to come to grips with.

The guilt that comes from receiving the love of friends and relatives is an interesting reality. There should be no guilt there. That is what friends are for. To love you in spite of your shortcomings, or maybe because of them. This journey has shown me an amazing amount of love and support form all sorts of friends and relatives, and some very unexpected sources. You cannot help that you are putting people out in some way. Yes, I know. People do not feel put out. They would not come and support me if they did not feel like it. There is little doubt that you feel the love, the unrestrained need to come and visit and talk, if no other reason than to make sure you are OK and not about to disappear down some abyss. I also realise that a lot of that support is directed at Janet and Devin.

The guilt is still there. I will deal with it. Come to terms with it. Acccept it. Dispel it.

No chemo last week. I now have the pleasure f an extended good week. This makes up for the days H1N1 stole from me.

I went to the blood clinic as usual last Wednesday after the Art Therapy session. Devin had to be at work by 3:00. We decided to give the clinic a try. We wold leave if they were too busy. The process from parking the car, giving blood, and getting back to the car was 20 minutes. This included a chat with the lovely nurse who, it turns out, has breast cancer. We had a long conversation. Very cool.

She left the pin and tubes in my Porta-Cath, just like the previous time. This is truly the best way to give blood.

I picked up Janet at her office the next day and we made our way to the PMH Chem Daycare. As lovely a name for this activity as any. We asked whether there would be a delay or not. Time enough for us to get a cup of something and do whatever else. The gentleman behind the counter let us know that we had about an hour because my drugs were not ready yet.

We went to Starbucks and had coffee (Janet), and tea (me). Took our time, talked and had a great rest. Finally made our way back. A nurse was waiting for us. Turns out my blood cell counts were too low for chemo. More specifically, my white cell count was low. Something to do with my Neutrophil count being too low. No one seemed particularly alarmed in any way. Not a big deal. Happens all the time. Nothing to be done but wait for the count to go back up. Could happen any time. I have been given a reprieve until next week, which is this week since I am writing this on Monday morning.

The chemo schedule had to be changed since we are now out a week. My last session will take place on December 23. Merry Christmas.

The complications that arise from this move are interesting. For starters, I have to take these pills an hour before going in to get the chemo. It really is not a big deal. The pills are tiny. There are seven of them. The pharmacy releases the pills the week of the chemo. I cannot purchase all the pills I need for the remaining chemo sessions. I guess they feel I might overdose on them or something. I have now taken the pills that were due for this session, so we have to get a new prescription.

Next week is going to be a busy week. Seeing the oncologist, and the surgeon, and getting a CT-Scan done to review the State of the Union. The surgeon will probably give the go-ahead for the Avastin treatment. I have to read up on its side effects.

My brother is coming for a visit this Thursday. My sister is coming for the day on Sunday. All good. Looking forward to seeing my brother. He gets to see the baby bottle. I am looking forward to the visits. I think it will help cope with the treatment. I had very few issues last time, mostly tired. But having my family here will help. Specially if Fetneh bakes me a banana cream pie!

I am keeping busy. Driving a lot more. The weekend was very tiring. I don’t think I ate enough, in fact I know I did not. We went to Ginger’s to look at showers fixtures. All the showers we saw have these huge round plates that cover the wall and hold the spigot that turns the water on and off. The ones that have a small discreet plate, done tastefully and with respect to the rest of the room are in the $7000 price range. You read right. Don’t get me wrong, I love a shower as much as the next person, but $7,000 for a shower fixture?

We next went to Elte to look at furniture. Janet wants to ge rid of all our furniture and start over. Elte is huge. They have carpets and furniture. No appliances or anything. They are way too good to carry that sort of pedestrian stuff. We saw a couple of pieces we like. The first was perfect for our living room until you sat on the couch. It has to be the most uncomfortable $11,000 couch on the world. Almost as if they went out of their way to make it so. Not that we are about to shell that sort of money for a couch, but why so uncomfortable?

Cut a long story short, we got home around four, and I was pretty much done in. Took a nap. Made some rice for dinner. Sharon Singer came by for a visit. We had a great time. One thing you have to understand about me is that I talk very fast. I loved watching Sharon as she cocked her head to one side and concentrated really hard to understand what I was saying. My brother says I would have to repeat everything when I was a child because no one understood a word I was saying. So little has changed.

I am getting out more these days. Driving. I am going to see Steve this morning to fix three computers. We cannot afford to be without them, so they have to be fixed and returned right away. He is good about that sort of stuff. Looking forward to seeing him again. This is the best. Life returning to some semblance of normalcy. May sound boring to you, but it is heaven in my books.

It’s all about me now. Life has never been all about me. It has always been about others with me playing a supporting role. But it is all about me now. Not necessarily because people love me all the more, but because they have little choice in the matter. And I feel guilty about it. All the time.

Guilt is everywhere. We feel guilty about just about everything. It is all consuming.  Paralyzing. It makes us do things and behave in ways that would not happen if we did not feel guilty. What I saying here is not new.

I watch as people wait on me hand and foot. I am often too tired to do anything about it. I go to bed at 8 while others stay up and clean the kitchen.

I am not allowed to vacuum because of the weight of the vacuum ceaner.

I can go shopping, but cannot carry anything over 10lbs. Too much strain on the stomach, more to the point to the rearranged pieces in the stomach.

I can tidy things up, but only to a point.

Mostly I lie around and watch others do things for me, around me.

And guilt is the most destructive feeling I have within me at these moments. I am putting people through a nightmare, and am powerless to take them out of it. The doctors and nurses all emphasize that this is all about me. I should not feel guilty. Go to bed when you are tired. Don’t feel guilty. It is all about me.

But I do feel guilty.

The situation is slowly changing. I am getting a lot stronger. I am driving the car and going out a lot more by myself. This is all in my good week of course. I emptied the dishwasher the other day, and am starting to do it more often. Seminal moments. I am also starting to fill it up. Life is getting better. I am a bit nervous around knives. I am told that the chemo makes you more prone to bleeding badly when you cut yourself. I am very careful around the sink.

But the guilt comes back in the chemo week when I am too tired to do anything. It is a very negative feeling. I have attempted to lead as guilt free a life as possible. Things happen. Deal with it. Apologize. Talk about it. Move on. Do not dwell on things. It may take me a while to formulate my thoughts and think through the process. Don’t let negative thoughts linger. Deal. Move on.

This journey has created all kinds of complications. Some obvious. But guilt was unexpected. Guilt over not being to do something you have done all the time. Specially when you appear healthy. But you are not.  At least not all the time. Somehow, you fail to let the good weeks make up for the bad weeks. The two should balance one another. They don’t.

Guilt is a terrible thing.

The good people at Wellspring allowed me to join the Art Therapy session that takes place on Wednesdays between the hours of 10 and 12.

Devin and I drove Janet to work in the morning. We got to Wellspring about 30 minutes too early. We had a coffee and read the paper.

Art Therapy. I had no idea what to expect and decided to try really hard to keep an open mind. It was not difficult. Last time I had anything to do with painting or drawing was in boarding school in England. I had the dubious distinction of almost failing that class. I mean really, who “fails” at art class? There were too many other things going on in my life at the time, like surviving in an all-white school as the only coloured person. Minor issue.

The room was small with a large square boardroom table. The instructor was still setting things up after the 10AM start time. It really matters little. What else do we have to do? Places to be? The table was covered with a couple of pieces of rubber mats. The type that some people put on their dining room tables to protect the surface. I gather that it was the first time for everyone based on the reaction to the mat and the discussion regarding its fabric. This did not bode well. The mats were covered with dry paint from previous such classes. By the time the dust had settled, there were six women in the room and moi, the sole male. Perfect ratio.

About 35 years ago, in Montreal, I went out to dinner with a bunch of friends and my sister Fetneh. There were 8 of us, if I recall. The waiter kept giving me the hairy eyeball. I was starting to wonder if I knew the guy and had offended him somewhere. It suddenly occurred to me, as I looked around the table, that his look was more quizzical than hairy. He was wondering what a douche bag like me was doing with seven women. The harem, such as it was, consisted of my sister, my oldest friend Nahed Rushdy and a bunch of other platonically related people. Nahed and I grew up in Ethiopia. She pointed out to me the other day, that we have known each other since grade whatever in the 60′s. Just to say, I have been in this situation many times.

The assortment of people was varied. You have to understand that all the goings on at these sessions is strictly confidential. So you can’t just go and blab it out to everyone. You stand on notice. The lady sitting beside me also has colon cancer. Her surgery is done and she is mending. She was very sweet and gentle in her manners. She does not need chemo therapy, lucky her. We will talk more next week. I have to digress again.

I used to be a computer trainer.  I noticed at a particular point that people tend to sit in the same seats when they come back for more training. Does not matter if the training is at their location or ours. The person would come back for their second training day, be it a day, week, or month later, and make a bee-line for the seat they had occupied the last time they were there. They were also quite put out and almost disoriented if someone had beaten them to their seat. It is a very peculiar behaviour. Not sure what it means, or how you would go about studying it.

I am sure that we will all sit in the same seats next week. I might even go in a bit late to test this. The instructor set up the room. Lots of paper, bowls of paint of all the primary colours and a couple more, pails of crayons and chalk, markers of all colours. Once settled, we were given our instructions.

We are going to paint, and discuss our paintings with everyone else. No judgments, All positive. No matter that you cannot paint. Let the child within you rear its tempestuous head and take over. Relax. Cry. Put your hands in the paint if you want the tactile feel. Everything is confidential. No recriminations. We are all in the same boat. Cool.

Our first assignment: paint your name. Not necessarily literally, though that is what we all did, but what you feel your name represents. Are you happy with your name? Do you love or hate it? Does it evoke joy? Whatever. The lady next to me folded her sheet in half. These are large sheet measuring 24 by 18 inches. She was being practical since there was little room. I followed suit. I was also being practical. How could I possibly fill up that amount of space?

Some of us sat there looking pensive, trying to not look concerned over the fact that we really did not understand how you could paint your name. Most went ahead and wrote their names down in BIG letters and started to colour them in, adding more and more detail. I decided to draw my name in Persian, just to be a bit different. I can neither read nor write the Farsi language, but I can write my name. It is a complicated language, beautiful, lyrical, but complicated. I painted some grass at the bottom of the page, a tree on the right, and a giant sun above and to the left. My name was front and centre. The sun is shining on me. So many interpretations!

dsc_5120-web

People revealed a bit of themselves in the paintings, which made for a very interesting session. One person drew a heart in which she drew the faces of her family. She cried when she told us what that was about, specially when she said she wants to live. Very poignant. Others added some elements of what they like to do around their names. Statements of fashion design, traveling (planes), and water. Lots of water all around. Seems water has a very calming effect on people.

One person had splotches of purple, and brown and various other colours all over the paper. It was all covered and looked a bit peculiar. Turns out it was her garden of lilac trees. Made perfect sense. You could see the garden come to life in all the splotches and stains covering the wrinkling paper.

Another drew a house with a path leading up to it. Her name was written inside in all its blazing glory.  She craved the safety of the roof over her head. She said she had no idea why she drew what she did, just came to her.

There was a fair bit of chatter, but nothing of any consequence. Strangely no one asked for an explanation of my choice of language. Devin thinks I should take up calligraphy. So I went out and bout some pens, paper and a book to see where it takes me.

The next assignment was to paint our safe place. This smacked a of of the meadow exercise in the relaxations and visualization session. Devin said I should have painted a swarm of mosquitoes. Not very safe. This one took a while. I have never really thought of a safe place. My bed? That is where I go when I am tired, or need to get away from everyone. But I would hardly call it a safe place. Specially when one of the cats decides that any time is good to lie on my stomach. What or where is a safe place? This one took a while. I watched as the others threw themselves into the project with great gusto. The person to my left, of the roof over her head fame, was also deep in thought. Another participant had closed her eyes and deep in thought. It turns out she was doing a deep breathing exercise and centering herself. Interesting concept.

So I sat there. The person to my left requested pencils to draw with. And so we sat, contemplating the safe place conundrum. My colon cancer partner had found a safe place of sorts. She watching the birds swooping in to their nests in the building across the driveway. They felt safe. She felt she had found something. I finally found mine.

cigar

Ramone Alones

The text which you can barely read says:
Nothing like a great Cuban cigar on a warm evening surrounded by friends and family enjoying the times, dinner, conversation.

My painting generated far more conversation than I expected. They wanted to know about cigars, do you inhale? What makes a cigar good? How much does a cigar cost? Do women smoke? The caption under the title: Ramon Alones reads: The ultimate Cuban cigar. 45 minutes of bliss. 45 minutes? Are you kidding me. Hence the safe place. Sit, smoke, enjoy the company and the moment.

One person drew a church, and her house, her garden, and family. Another her time at a cottage that she found peaceful under the radiant sun surrounded by water. Another drew reference to her cottage that always brings solace and peace. My colon cancer partner gave up on drawing the building across the way. Her drawing was the most moving for me. Her thinking evolved into drawing a bunch of rectangular boxes in a bit of a pelle mele from the top of the page to the bottom. Somewhere in the middle of the page, two of the boxes leaned against one another. She drew herself in the triangle that was created by the joining of the boxes. There was great emphasis on the person. She surrounded herself with more protection, dark lines that enclosed her in the space. She equated her safe place with somewhere to feel comfortable and warm, a place to make peace with yourself. I will have to spend a bit more time with her. She is proving vulnerable and terribly interesting.

This is a long post. There is more.

These paintings generated a lot of conversation. Not sure how much of it was intended or not. The instructor was content to let people speak their mind and comment. He was quiet through most of the banter. There was a great deal of respect amongst the participants. No recriminations or judgments. All talked and participated. I took a lot of notes.

How do you define a safe place? Is it internal or external? Mention was made of the people who get caught in disasters losing their homes and belongings. How distraught they are. Have they lost their safe place? Should they consider the material belongings as safe? Is it not better to internalize the safe place? That way you have with you always, taking it with you through good times and bad. Radiating from the inside out.

How do you deal with the well meaning people who surround you with the best of intentions? You keep having to explain yourself and what you are going through. People just don’t get it. They ask the same questions, over and over again. We are dealing with the pain, both physical and emotional, why don’t people understand? We are trying to remain optimistic as we travel this long journey, trying to forge a new identity, a new reason for being. Why don’t people understand? Relatives and friends, all well meaning who criticize you for having a messy house instead of pitching in to help. Why don’t they understand? Should we expect them to understand?

What expectations should we have of others? How do we get support mechanisms in place that would ease the pain? What role does religion play? Is it a panacea? Or a placebo? Giving you false hope and expectations? How does God talk to us?

We talked about making a connection with life, with the earth, digging your hands in the garden and feeling the soil.

Water was in three or four of the drawings and paintings bringing peace and tranquility to people’s souls. Water, vast, in constant motion, calming, at peace with itself.

A couple of people cried, albeit briefly, stifling back the tears and immediately apologising for it. Everyone was quick to offer them tissues. Why apologise? Of all places, this is the one where no apology is required. Don’t they know that we all cry? All the time? We apologise for all sorts of things.

I had a surprisingly good time at this session. It lasted over 2 hours. The instructor had a difficult time bringing it to an end. The group was not willing to let things go. I am looking forward to next Wednesday. Look forward to your comments.

Life was measurably improved following the Saturday letdown. All my H1N1 symptoms are now over. My arm is no longer hurting. I am very glad I got the vaccine a week before the chemo treatment. The separation ensures no confusion of symptoms.

Sunday proved to be a good day. Janet went to the office in the morning. We went shopping for groceries in the afternoon. While most decry shopping for food as mundane and boring, I revel in the act. Mundane activities are a good thing. We went to Kensington Market. For those who live in foreign lands, Kensington Market is the immigration gateway to Toronto. It has been occupied by all sorts of different groups of people over the years. The current occupants are South American. Which is a good thing since Janet was making paella for dinner. Janet got to talk in Spanish with some people who were giving us advice on the best rice and the best way to go about making the dish.

We could buy live chicken at the market when we first moved to Toronto 30 years ago. All the live animals are gone now. I guess health regulations. We are living in a nanny state.

We had a good walk. Bought food, napkins, cheese slicer, the best garlic masher in the world, and a bunch of other stuff. As I said, mundane stuff.

Supper was amazing. Finished the leftovers the next night. And I don’t even feel guilty about not sharing them with anybody else.

Monday was an amazing day. I visited my ex-client, Monarch Wealth. I figured I was healthy enough. The most difficult part was stopping people from hugging, kissing and shaking hands with me. Not allowed. No sense in taking a chance. Picked up the dry cleaning once done. Bought light bulbs for the bathroom. Got a muffin and went home, I felt strong and mighty.

Sent in the request to move the blog to the new location. I mention this only to emphasize the attempted return to normality. All the while trying very hard to feel good about feeling good. There is always a nagging sense of impending doom back there somewhere. And as good as I feel, there also always seems to be some part of the body that insists on bringing you back to reality. Never anything serious. A small pang in the stomach is often all that is required. Shortness of breath after going up the stairs. Janet refuses to install an elevator for some reason.

I overdid my activities on Monday. I think there is some sense of urgency that builds up in you, so that when you feel good, you want to do everything in that one day. I paid the  price for it in some small measure on Tuesday when I was more tired that I anticipated. I refused to give in though and mustered up enough strength to go about as normal an existence as possible. Spent a good deal of time on the phone attempting to resolve the issues with the blog.

We are living in interesting times. We are creating amazing and wonderful technologies, the results of which are often unpredictable. The moving of the blog is one such example. We exported the blog and the database it was associated with. The idea was to move the domain to a new location and import everything back in.  That was a smooth process. WordPress which is the blogging program I use is not prepared to make the rest of the project an easy job. The database was pointed at the old location. Moving it did nothing. Every time you accessed it, you went to the old location. At some point, the new location stopped responding. We had to modify the pointers to point to the new location. There is no automated process for to take place. Did the writers of this beautiful program not envisage that anyone would want to move it to a new location?

There are numerous example of programming short sightedness.

I will cover Wednesday in its own entry. As I said, I feel strong and mighty.

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