Our fears arise from things we don't confront. Once we are willing to look fully and deeply at the source of a fear, it loses its power.

- Shakti Gawain from the book One Day At A Time In Al-anon

1997 has been a terrible year with regards to my emotions and grief. I get up from the table make myself a cup of tea and again study the configuration on the table in front of me. It is a jigsaw puzzle of teddy bears. One piece seems to jump out at me, bidding for my attention. All of a sudden I'm starting to see things more clearly, despite the spaces. An assembly of teddy bears start to emerge, many fuzzy faces staring back at me. I pick up the phone... it rings and rings and rings, no answer! Damn! Where is everybody? My life is falling apart!!!! I'm getting desperate.....I DON'T KNOW WHAT I MIGHT DO!!!! Or what I expect anyone else to do! Why the hell didn't anyone realize that Gordon's meds where still here - Morphine, Dilaudid, anti-depressants, plus my anti-depressants... what more would I need to relieve me of my pain? Emotional and physical. Again I call.....finally someone -another PHA - Sean - answers the phone.

"What's wrong Church Mouse?" he asks. "Everything! I miss Gordon! I feel like I am losing my grip on reality!" He tries his best to offer support. He was an acquaintance and didn't know me as well as my other friends.We talk for a bit and I promise I will get some help the next day.

Back to my puzzle; I am restless. I keep the curtains drawn so no one can see me falling apart. Pain floods over me. I am still sobbing when the phone rings, giving me a start.

"How are you?" The voice on the other end of the phone asks. "NOT GOOD!" I blurt out, staring at the mass of teddy bears through blurry eyes. I suspect there are a few pieces missing. These last couple of pieces don't fit properly. My head hurts from crying so much.

Now comes the big question.... "What happened, Church Mouse? You seemed fine the last time we talked."

"I don't want to go on!... I don't think I can!... It's too hard!"

She asks, "what would Gordon think?"

"I can't say! I don't know!"

I am so tired of all the pressure on myself to stay in control all the time. I'm not sure she understands. I assure her I will be okay - that I just needed to vent.

The next day, I get a call from my support worker, Mary.

"What's going on, Church Mouse?" Not wanting to make an issue out of how I was feeling I replied, "what do you mean?"

"A little birdie told me that he was worried about your emotional state." Well, I tell her, "I don't trust myself." My emotions hit me like a tidal wave. "I don't know if I am sick or I just think I am!"

Mary replies, "get your bags packed. I have booked you a retreat in Toronto for PHAs, caregivers and people living or working in the field of AIDS." I'm sure my life won't have a drastic change after this week, but, I hoped I would come away with a renewed spirit.

I arrive in Toronto to find wonderful, caring people, who listen patiently as I share who Church Mouse is, and sympathize with the fact that I have a sore mouth and can barely eat. (Even a glass of water hurt.) Even though I am there and in good company I am a mess emotionally and physically. One evening after everyone went to bed I toss and turn, hoping sleep would soon come. But instead I suffer my worst panic attack. So much so that I pull the dresser in front of the open window. I am on the second floor of a college dormitory. My heart is pounding, I am sweating and my mind is racing. I am thinking how easy it would be to slide myself out onto that window ledge. There is an internal war going on . The best I can do is pray for some relief.

I am still awake when the sun comes up. I made it through the night! In that state of mind I cannot not see how my actions would affect those who loved me. As soon it is light, out of course I fall asleep. One of the ladies (Lillian ) comes to see if I was coming down for lunch. By this time I had showered and was down in the dining room. She must have wondered why the dresser was in front of the window. She doesn't say anything except that she was concerned because she didn't see me at breakfast.

If I remember right, Lillian worked at Casey House (a long term home for people living with AIDS) as a Chaplin. I was drawn to her caring spirit. I ask Lillian if we can go outside the retreat for a coffee? As we walk along the street past the Hockey Hall of Fame I am fighting back the tears. As we are sitting having our coffee, Lillain comments, "I sense that you are holding something back, Church Mouse?" I try several times (with painful pauses) to tell her why I am so upset. Finally with much shame I tell her how I feel like a hypocrite!

"How could I have a stronger faith in Gordon (my husband) than I have in God?"

She says "it is because you could see Gordon - but it is okay, because he was my messenger to God." My shoulders sink in relief. I feel like a balloon that had the air let out. Now that I feel safe sharing with Lillian and knowing that she isn't judging me I continue to tell her the rest of how I don't trust myself and about how my thoughts of suicide consume me. She quietly listens to my desperate words. She assures me, "you don't have to join Gordon to have a connection with him." I tell her there is a wall between us and I need to break through it. She tells me that through prayer and meditation I may be able to make that wall more transparent.

"Keep writing to him. He is always with you."

We are able to get my room switched to a main floor and I sleep a lot better.

Back home I am still fighting the demons of depression, trying to hide my feelings from those who would rather not talk about them. I feel like my emotions have no place in the real world! I need to keep talking to Patricia (the Chaplin at the hospital) who has been helping me to deal with my grief.

The teddy bear puzzle is now complete and glued to a piece of card board - a reminder that the pieces of my life will eventually fit together.

"At least you remembered some of the words."

Back in June I told you who the Church Mouse is today. Now I feel compelled to share with you a glimpse of growing up Church Mouse. I grew up in a small farming community in southern Ontario, where my parents worked hard raising livestock to make a living and raise 4 children. I was one of the lucky ones who started out in the one-room school house. (All eight grades all together!) I don't know how our teacher managed. My mom or dad would usually drop Val ( my older sister by four years) and me off in the morning but because my dad trucked cattle to market for other farmers we often had to walk half a mile home. I just had a vision of my grandfather telling us, "yeah, we had to walk four miles up hill both ways through 3 feet of snow!" ...You know the stories!

Speaking of Dad's father... about a year ago my sister Beth and I were looking at the local paper. On the front page was a picture consisting of all the kids In Grandpa's school. It was about to be torn down. Beth asked my dad why didn't Grandpa, who was sitting on the floor in the front row, have any shoes on? My father told us that "Grandpa use to say it was his brother's turn to wear the shoes!" How sad - and funny - is that!

Being one of only three students in grade one I soon became a target for the older boys who thought it would be funny to dip my poneytail in the ink well. At least Val was there to set them straight. In grade two we were bused to the new public school. No more snakes under the school steps and neighbours' dogs chasing you at recess! But I did miss the tobogganing on our lunch hour.

My favorite event at our new school became the penny auction for The Red Cross Society. We were asked to bring a small item we were willing to part with to be auctioned off. Oh yeah - and our pennies! I guess this is where my love of auctions stemmed from.

School was always difficult for Church Mouse. I struggled every grade to pay attention, stay in my seat and keep my mouth shut. The absolute worst was when the teacher would send me to the map to find a place and I had no idea where to look. Then after what seemed like forever, she would get another student to show me - humiliating me all the more. How can a person possibly learn by being made to look stupid!

My first experience with stage freight happened in grade five when I volunteered or was chosen (most likely it was the latter) to play the part of Marcie in A Charlie Brown Christmas. I was ecstatic because my dad would be there in the audience; Mom was home with my little brother. Well, the moment of truth arrives as our class files into the auditorium and up on to the stage were I become trembling Marcie. As the curtain swishes back and I am looking out into a pool of smiling parents, the lump in my throat becomes the size of a peach stone. The words have left me, my mind is blank, all I can do is stare back like a deer in headlights. So much for my big debut! The teacher off to the side of the stage is prompting me. One word came, then nothing, then another couple words. (Oh my God this is painstakingly awful! I wish those people would stop smiling, I 'm dying a slow death here!) Finally I am finished that anguishing ordeal. Never, ever again! I was devastated and humiliated unlike my classmates who were playing cards or goofing around since our teacher was watching the rest of the concert. I sat in the classroom with my head on my folded arms trying to fight back the tears. That's when I heard a voice beside me; raising my tear-stained face I saw the lad who had been picking on me every chance he got for the last three months. Trying to assure me that "it wasn't that big a deal" he said "at least you remembered some of your lines - I didn't remember any of mine."

Fast forward 35 years, marathon runners are going to raise money for our agency over 24 hours. I am asked to tell my story. I am so proud to invite Beth, my dad and one of my dad's neighbours who wanted to hear me speak publicly. After the dinner I sneak out to brush my teeth and try and still my nerves... next thing I know, one of the agency staff is standing in the doorway saying Church Mouse, you're on!!!!Oh my God - now I have to return through the banquet hall with my tooth brush and paste and with some sort of composure, retrieve my notes and get my butt up to the microphone. All and all this time the words came easily and confidently. After, as we are standing on the steps saying goodbye, Dad hugged me and said "Church mouse you did good!" Who knew the church mouse would finally find her voice and shine? CM

I believe that people come into my life for a reason................

It was the summer of 1997. The pain ripples through me as I am looking over the park where Gordon and I exchanged our wedding vows. In the distance through teary eyes I can see the little wooden bridge that I thought would add a touch of romance to our big day. The path I walked with my dad in anticipation of being Gordon's life partner. Sitting there, immersed in the past I have to admit I need someone to share my grief with. So I signed up for a grief workshop. Trying to deal with all the emotions that flooded me was way bigger than I could handle on my own.

I think it was the second time I attended this group that one of the ladies I had met a week earlier and shared my story with gave me the book, "The Colour of Light - Meditations for people with HIV/AIDS." At this time, Joy invited me to come to the hospital where Gordon had passed. The Chaplins were putting on a service for families and friends who had lost loved ones the previous year. She told me she wanted to introduce me to Patricia, one of the Chaplins who had helped her when she lost her husband. Well, I went dragging my feet and feeling quite alone. It turned out to be a beautiful service; it was uplifting, not depressing like I feared. I was pleasantly surprised to meet Patricia. She had such a warm and welcoming personality and she could see I was in need of some counseling. She told me, "come and see me, Church Mouse." We connected from that very first visit. She helped me through many losses - not just deaths but relationships as well . (I saw her up until she retired from the hospital.) She listened patiently as I recounted my losses.

I can remember how difficult it was for me to get started. I feared that my emotions might be judged as crazy or wrong. An opportunity came up were a female speaker was requested to sit on a panel about HIV and AIDS at the Indian reserve. Despite my grief and depression I agreed to go. My brother Al volunteered to drive. He said he was interested in hearing my story. I was nervous about how he would cope with hearing the truth of my life. Although he saw portions of what Gordon and I were living with, I felt that some of what I might say may catch him of guard.We arrived to find that I was to be one of three speakers. There was a well known woman HIV specialist, and another HIV positive women from the aboriginal community. I applaud this young lady - she couldn't have been more than 20 - for coming out and sharing her story with her family, neighbours and community.

I only had to worry about the one who drove me there, one I'm sure who was taught that men don't cry and to keep your feelings in check It's always been hard to know what Al is thinking. I only hope he was proud of me in my efforts to educate. Hours after Al dropped me off, lying in bed, shadows appear on my wall of dancing leaves outside my window. The wind is howling. I can't sleep. My mind is wondering how Gordon could leave me here to face a world, one where people judge me because of this horrible disease that has been bestowed upon me. I feel I am expected to be a tough, independent soldier in this battle. How am I suppose to be strong when my heart feels like as battered warrior? To be afraid to live, too afraid to die. I push those thoughts out of my mind and recapture the memory of the day I crossed that little wooden bridge to my new life.

You had a gift of being a wonderful soul,
You made me feel totally whole.

You suffered much in silent pain,
You fought the urge to even complain.

The road was rough that we would travel,
While this disease would soon unravel.

You held your head up high,
Wouldn't let them see you cry.

And when the end was almost near,
You protected me from your own fear.

When you left me I struggled to cope,
It was hard to have any kind of hope.

There is a crack in my heart you see,
That no one feels but only me.

I know you chose your time to go,
I can't see how I didn't know.

Maybe my mind wouldn't let me see ,
The eventual parting of you and me.

Today, I feel your presence in my life.
But the pain and loss still cuts like a knife.

I miss your conversation and your touch,
The pain I feel is just too much.

We didn't have a lot of time for fun,
Mostly there were struggles to be fought and won.

I await the day when I will find you my friend,
For the love we had has no end.

Love, Church Mouse

I read somewhere that, by not letting others help, you may be depriving them of the opportunity to give support, or even sit and listen and to feel useful through the rough times. Back in 1995 when Lena, my support buddy, found out she had cancer, my support worker Trish suggested that we needed to think about adding a second support buddy for me. Hence, Paige entered our lives. Gordon and I had previously met her at our Agency's Christmas party. Of course, Lena was sad that she could no longer fulfill her role.We still kept in touch and she shared Gordon's and my most important day. Life was tough back in '97, being on both sides of the fence - caregiver and also needing help myself. I can tell you that when we let pride get in the way we won't let ourselves be vulnerable. Our attitudes may become "I'll fake it until I make it" or "at least we try!" We create a comfortable distance between us and those we love. I've been there and every time life deals me an unfair hand.. I fall back into a predictable pattern, reluctant to accept help with anything for fear of vulnerability.

After some convincing I finally accepted some help with meals (even though I wasn't eating much because of the ulcer in my mouth,) cleaning, but most times I preferred if they just sat and talked. Beth is the type who needs to be doing something productive. She would just go ahead and do what she could see needed doing. Most of the time they were to make sure I took my meds. I had a tendency to sit there with the pills in my hand not wanting to take them while time slipped by.

Al had the weekend shift. It must have been very draining on him looking after mom during the week and me on the weekend.Val was great at getting me to doctor appointments on time and out for fresh air. One of the 6 people on my care team put up a large calendar marking down who was coming and when and their phone numbers. I think their mission was to get me to put some weight on. I was 89 lbs and every inch of my body hurt. I lost my butt because of the AZT (years ago I would have been happy!) but when your have no cushion and are sitting on bone it sucks!

A home care physical therapist was sent out to try and help me. I just loved this woman! She had a wonderful English accent and a beautiful personality. Most of all I enjoyed her company. She believed that I would recover and her positive attitude helped me immensely. She brought with her a chunk a foam which made it easier to take a bath. It worked well because you could just stand it on end and the water would run out and would dry quickly. I think I was an easy patient because they didn't have to do much other than giving me B12 shots in my hip. Ouch! I didn't have much meat on my bones. I don't think they did blood work, I think that was done at the doctors office.

The hardest part was I could not see this as a short term arrangement. I felt that once I accepted help I would lose my independence. It turned out in the end to be not as bad as I imagined. Thank God for family and volunteers!!!CM

One does not have to stand against the gale, One yields and becomes part of the wind.------------------Emmanuel

Taken from the Colour Of Light, Perry Tilleraa

Carrying on alone after Gordon died, it was tough to be tough! I felt like I was failing at being the strong person I expected myself to be. I worried about what others though of me. I felt they might see me as cold with no feeling because of the front that I was able to put up. They could not see my broken heart or tear stained pillow.  I dove into speaking publicly about being a caregiver and living with the virus myself. Trying to postpone the infinite pain.

Almost losing track of the real me, I just couldn't keep up the pace. The "GLUE" as Beth called it was starting to let go! AIDS became the centre of my life! I went from spending most of our savings to wanting to check out permanently myself. Looking in the mirror there were no traces of the smile that use to come easily when I heard Gordon's voice. One of my friends told me, "the best way out of something is through it." Smart lady! In 1997 after many losses, stress and the side effects of my HIV medications I dropped to 89 lbs. My CD4 count was a mere 16! I was now a size three! I developed an ulcer in my mouth that made it extremely hard to eat. Even water hurt. I looked like a skeleton of the person I once was. This was an awful place to be... so weak, so vulnerable. It takes a lot of energy to live with a disease. At this point all I wanted was one more Christmas with my family and to celebrate my 40th Birthday. 

Twixt the optimist and pessimist. The difference is droll; The optimist sees the doughnut but the pessimist sees the hole. ------------McLandburg Wilson

There is a medicine for despair----we call it hope.

(Both taken from The Little Book of Hope H.Jackson Brown ,Jr.)

Hope is what keeps me afloat.

CM

I wear my grief like a heavy raincoat. It is the little reminders that are the hardest. Such as... a song, phrase or even the way Gordon's brother Jake lights up his cigarette that will flood me with emotions and tears. I am overwhelmed with my life. I wish my mind would slow down.

I had been going like the energizer bunny rabbit for 3 yrs. My brother Al has been so great. He listens to me revisit Gordon's last night over and over again trying to understand. I am very worried about my support buddy, Lena. The doctors have been treating her cancer with chemo and radiation. They finally admit there is nothing more they can do. She told them she was stopping all the meds all together except the pain killers. I feel helpless as how to be there for her. Each day of my life has become a struggle. My doctor told me to "take a day off from your life."

March 31/97 was my last visit with my dear friend Lena. It must have been Easter because I remember her Mom cooked a turkey dinner. We visited a bit before we ate and she was anxious to show me her pain pump because it had a burn mark from a cigarette on it. She told me with a smile, "I think this belonged to Gordon!" Just knowing that up lifted her spirits. She used to tell me that Gordon looked like Don Johnson from Miami Vice. Funny thing was, I have seen pictures of Gordon in his teens and he wore a blazer with a t-shirt underneath.(He told me that "It was the cool look back then.")

I gave Lena an angel teddy bear that I bought for her in Florida. When you pulled the string it said "I LOVE YOU!" Sitting on her bed chatting, she was holding that bear. I saw that far away look that I had seen with Gordon a week before he passed. A little while later, she kept drifting off on me so I told her I would let her rest. I knew in my heart as I walked out the door I was saying good bye for the last time. April 1st, my friend succumbed to her illness with her family and partner present. I called my mom. I don't remember her words but I remember I felt comforted after I hung up the phone. I took the water pitcher Lena had made in our ceramic class, filled it with flowers and took it to the funeral home. Little did I know it wasn't finished and the water eventually seeped out. Paige, my new support buddy, offered come with me to the visitation. As we are hanging up our coats I turn to find her sobbing. I asked what was wrong and she replied, "It seems like yesterday we were here for Gordon!"

The next day, Al, my brother accompanied me to the funeral he could tell how much stress I was under. I am exhausted, my mind is working overtime worrying about my Mom's health. I have to stop and think about the simple everyday tasks.Too many losses. Not just my husband and my buddy but also friends who I met in my HIV support group. I am finding it hard to function. I'm a mess, not eating, not sleeping and crying a lot. If I have to wait in line at the bank or the grocery story I feel nausea and ready to collapse. It is hard to accept that life goes on. People still have parties, plan weddings, and celebrate special days. I feel like I am invisible. That my grief is non-existent. The only way I can deal is to keep writing to Gordon.

CM

By Church Mouse

The title should have been in capital letters but I do not respect my disease enough to do that. Do you hear me you stupid intruder? You barged your way into my life and that of my partner.You tainted friendships, caused both physical and emotional pain, prayed on our weaknesses, stole our hopes, dreams and our dignity. You stole my opportunity to have children with the man I loved. Cunning and manipulative, always keeping us on our toes. You left a trail of heartache and pain when you stole Gordon and many others from us that loved them. Well AIDS, don't even come looking for me because I have more support, resources and determination to beat you at your own game! You will not win! I will not handle you with kid gloves - you do not deserve it! My Anger may not be good for me but, it only reminds me of the fight I still have left in me.

Please note:I respect those who have changed their lives for the better because of their diagnosis of HIV/AIDS. CM

 (Continued from Snowbirds, part one)

I was well aware of the U.S. policy that anyone suspected of being HIV positive would be turned back at the border. Therefore I was a bundle of nerves and nauseous in the backseat of my father-in-law's car. All 97 lbs of me was wrapped up in Gordon's winter coat. Joe said "let me do all the talking. Only talk if they ask you a question".

The suspense was killing me. I had been worrying about this since the day I found out I was going. Just before I had left for Florida, my HIV specialist had enrolled me in a drug trial.Previous to this I had thrown my meds in the garbage convinced that they wouldn't work for me either. But... I figured Gordon would want me to give it my best shot. So I gave in. Keep in mind that was '96 and he had been ill three years prior to the new Antiviral drugs that came out. My combination was AZT, Squinivair and DDI. Three times a day, one hour before or two hours after meals.

Florida! I am so happy to be here! First thing, I met the snowbirds (no, not the the ones who fly jets) but a wonderful exuberant bunch of seniors.We played cards, barbequed and one lady showed me how to make a 5x5 inch dress shirt out of five American one dollar bills. It even had a collar. One of the other ladies took me under her wing and told me she was taking me to the straw market. I bought so much stuff - including a set of luggage - that I had to pay $20.00 at the airport because I was over my limit lol.

I ignored the fact that I shouldn't be out in the direct sunlight as one of the med bottles had stated. I soon started to experience strange occurrences with my vision.Walking into the grocery store I notice the words such as Specials, Produce or ice cream would appear to me like this: S e ials,P duce, ce cre m.When I looked at a person the only way I could describe it was... you know on t.v. when they try to hide a persons identity by blurring their face? I was horrified. Later it changed to a shattered glass effect.Lori suggested we go get a drink and sit before we drove home. It seemed to pass and I was able to get us back to the trailer park.

Disneyland was a blast. But my most devastating moment came at the Florida state fair. Joe had wandered off to look in the agriculture building. Lori wanted to sit down and rest a moment so I told her I would be right back and I slipped back to a booth we had passed earlier.Waiting and watching the boisterous young man trying to coax people to let him guess there age or weight. I figured no way would he guess my weight. I was wearing Joe's jacket (because of the weight loss I was feeling cold.) " 97 LBS" says the carnie in front of me. "No way,"  I said,  "I weigh 99lbs!" He replied, "well let's see - get on the scale."

Slowly I return to Lori fighting back the tears."What happened?" Lori asks. I admit to her what I did. She tried to assure me that things would be okay and off we went to see what had Joe's attention.The rest of my trip went by quickly and soon I am back home watching the video of the auction where the chair we calibrated was sold for $75.00. the money donated to my ASO.

CM

I've learned.... to keep looking ahead. There are still so many good books to read,sunsets to see, friends to visit and old dogs to take walks with.

from LIFE'S LITTLE TREASURE BOOK... ON HOPE. H.JACKSON BROWN JR.

Our local ASO was hosting their annual Chairs For Charity auction in Feb.'97. I felt I wanted to do something in Gordon's memory. So I approached my father-in-law Joe with an idea. He was totally on board .I now needed to acquire a chair we could use as our canvas. Racing up to my parent's home to scrounge around, my mother suggested that there were two chairs in one of the unused back rooms upstairs. Perfect! They had belonged to a set that was from the 1920s. They had a home in my great grandparents house until they somehow wound up in our farmhouse.What a great find! Joe couldn't wait to get started He whisked it off to have it stripped, while Lori, my mother-in-law, and I made plans for our up coming trip to Florida.(I was driving down with her and Joe and flying back in a week.)as they were staying much longer. When Joe returned, off we went to Lens Mills to get some patterned fabric for the seat. It was off-white with red roses and green leaves. It turned out the the chair was walnut and in good shape. Joe stenciled "EVEN HEROES NEED TO REST "on the front of the chair. I was sent out to get varnish, and when I got back he had added something to the back of the chair. I asked why the intertwining roses? He replied, "they represent the love you and my son had for each other." AWWWWWWWWWWWWW. Okay, after I put the varnish on, the chair is ready. One problem: the auction is halfway through my trip to Florida. So my sisters Beth and Val will drop it off and return for the auction. They will take the video camera.

To be continued........

AT THE END OF YOUR DAYS, BE LEANING FORWARD - NOT FALLING BACKWARD.

-LIFE'S LITTLE TREASURE BOOK, ON HOPE H.JACKSON BROWN,JR. Dec.3/96  

Dearest Gordon,

Yesterday I gave a presentation at the University Of Waterloo. I felt it was the best I have done so far! I was totally prepared and proud of myself for being able to keep on doing what I needed to be doing; educating others about my illness. I knew that my niece Jen was planning on being in the audience as she was a student there. What I was not prepared for was her reaction to what I was saying... she knew my diagnosis. At the end of the presentation as she was patiently waiting to talk to me I could tell she was fighting back the tears putting up a brave front (it runs in the family). When she finally got a chance she said "I didn't know Grandma has cancer!" Ooopppps! I had been talking about how difficult it was to be there for my husband and be able to get home to see my mom who was struggling with cancer. Jen said she suspected it but... I confirmed it. Oh dear.

Dear Hon, Dec 4.

Another speech another school. I am bouncing off the walls. Today the students were so attentive you could hear a pin drop in the class room. I am breaking the stereotype, having been a married woman - not an IV drug user, gay man or ever having a blood transfussion. I was talking to Mary today and she shared with me that after the funeral her and Linda had gone for supper and ended up singing Karaoke. They chose a song apporpiate of you my dear: "Born To Be Wild." She said you would be laughing and shaking your head at their efforts. Lately my emotions are so all over the place. Relaxing in a hot bath that evening it all of a sudden hit me .... I could die too!

Dear Gordon, Dec 10th

As Christmas is swiftly approaching, I don't feel like putting up a tree, but... I have volunteered my party room downstairs for our dinner. Because I had them play the Little Drummer Boy at your service it has made it difficult at this time of year. The funeral home sent me a notice that they will be adding a special Christmas bulb to this year's display in the park in your memory. I was out at another high school when a timid little voice with tears in her eyes asked me, "how can you be here?" I told her, "because this is where my husband would want me to be."

After Christmas I stopped to thank the nurse who had been so kind to me that last night of your life. When she saw me standing in the emergency department she said "I have been thinking about you and wondering how you were?" She shared with me how after the doctors had Gordon stabilized, she had joked with him and he smiled at her. She turned away to do something and when she looked back he had quietly slipped away. She said she was so surprised and felt absolutely awful because she was coming to get me. After leaving the hospital I needed a hug and some company so I went to Beth's.I had recently got my hair cut and permed. Chris the 3yr old asked me" what's your hair doing?" I explained that I curled and coloured it. "Oh, you got new hair!"

Gordon, talking with my buddy Colleen,she told me that a friend had called you Charlie Brown. I thought you were more like Snoopy in personality because of the way Snoopy always took care of Woodstock, making sure he was safe from the storm. Your sister was kind enough to buy me a Christmas gift because she knew you were worried about not being able to go shop for me yourself. I miss your wink and your smile.

ALONE Alone again,sad but true,

I will never stop loving you.

With you I shared my deepest thoughts and tears,

With me you shared your pain and fears.

It takes a lot of courage not to complain,

To force a smile when in so much pain.

You gave me the gifts of strength and courage too,

My guardian angel is definitely you.

You say "we will meet again someday."

I remind myself of this each and everyday. CM

By Church Mouse

Life has thrown its worst at me today

They've come and swept my friend away.

The years we had, but a few

How do I understand what has happened to you.

The shock seems to mask my pain,

It's to hard to Imagine not seeing you again.

I knew this day would come, sometime love.

Maybe the word came from up above.

You took with me part of my identity

I hope you have found serenity.

I like to think we were two of a kind

Like two roses carefully intertwined.

One heart, one love, one soul.

But with you gone there is just a dark empty hole.

It resides in my heart you see,  I'm not sure what will set it free.

They say time heals all wounds my friend

But how can my heart possibly mend.

It feels open and vulnerable but you can't see,

I hide it well, It's a trait of me.

Tomorrow is another day so I will push on with al I've got.

Because it was you I really sought.

May you rest in peace my special one,

Your battle has finally been won.

CM

By Church Mouse

Man is expected to be strong and courageous and made of steel
He is often challenged to how he should feel
How much pain is one to bear?
When you are losing your health, it's just not fair
My man stood steadfast in his fight, he didn't let hope get out of sight
He never tried to blame anyone for his fate
For he knew it was much too late
He accepted things for what they were
He knew I would always be there
My knight, in shining armour bound
Slipped away without a sound
I'm sure his grandma told him, "come with me,"
"Your pain has now set you free."
"God sent me back for you,
Your faith came shining through."
Your time on earth has come to an end,
You'll never be forgotten, my beautiful friend.
Love, CM

By Church Mouse

Man spends his whole life running from feelings with the mistaken belief that you cannot bear the pain. But you have already born the pain; what you have not done is to feel all that you are beyond the pain
-Bartholomew

I had a presentation to make at the nearby college, so Lisa’s husband Rick and Gordon’s brother Pete came to visit while Lisa accompanied me. It gave the guys a chance to talk without me hovering around fretting.

Gordon’s grandmother’s funeral was the 12th of November. We both felt bad that we weren't able to attend. We were dealing with life now hour by hour (I couldn't see this at the time.) That particular day started out like any other of the past three years. We were watching "Coach" on the television that evening and we were laughing at the attics of Luther, the one that pulled his dog around the college campus in a wagon. I couldn't hug or touch Gordon; about the only thing I could do was kiss him on the cheek. Even the weight of the blanket shot pain through his legs. He made the comment that he was feeling very congested and asked me to call the doctor. I left a message for the doctor to call us.

Since he was so calm and there was no sense of urgency, I went to soak in a hot bath. My husband would tease me that by the time the tub was filled up I would be back out again! This night I was exhausted and anxious. I started sobbing telling God, “I just can handle anymore!!!" How does that saying at A.A. go? LET GO AND LET GOD!!

When I returned to Gordon he calmly said, "Call an ambulance." Minutes later the cops were pounding on the door. I don't even remember if I buzzed them in. The lady officer advised me to gather Gordon’s meds and health card. Returning to the bedroom the last words I heard Gordon say to the paramedics was, "Please help me I can hardly breathe!!!" Outside the officer asked me, "Do you want to come with me to the hospital?" Before I could answer the paramedic opened the passenger side door of the rig and I hoped in. There was a little window behind me but I was terrified to look back to see what was going on.

At the hospital Gordon was whisked off behind doors that read “Do not enter” and I was left to wait and wait and wait alone. I never thought to call anyone. It was the wee hours of the morning. Now I wished I had. I hated being separated from the one I loved. Time seemed to stand still. Finally a nurse came and got me, taking me down a corridor where a very young doctor inquired to what my husband’s wishes were. “Did he want to be resuscitated?" I knew the answer but had a hard time saying that one word.

The doctor wandered off like it was an everyday occurrence. A very compassionate nurse wearing a pastel coloured uniform (why would I remember such an insignificant detail?) led me into another room where Gordon was lying in the bed. Staring at him in disbelief I said, “He's not breathing!!!" She said quietly, "You told us that he did not want to be resuscitated." She left me for a minute to get me a cup of water and bring the phone. This nurse said, "Your husband must have been a wonderful person." A bit annoyed I replied, “How would you know? You didn't even know him!" She told me that after Gordon was brought in and they had him stabilized she tried to make him more comfortable. He told her, "Don't worry about it"(that was what he always told me.) I felt some comfort in what she said then and in the future would learn more from her about what his last minutes were like. Everything was just too much to take in.

I called Rick, blurting out “We are at the hospital and Gordon is gone." The nurse called my sis Beth because I knew I couldn't. I just couldn't wrap my mind around what just happened. I don't recall crying, I do remember pushing back his bangs and telling him I was sorry. I did not know this would be the night. I asked the nurse, “Do you think he can hear me?"

Now I was being escorted to a tiny dimly lit room with a love seat and a couple of chairs. The end table held a big thick bible. Family arrives. I am so lost in my own grief that I can't even imagine how horrible it is for them .The chaplain’s lips are moving but I have no idea what she is saying. I've shut down. I am numb and angry (if that is possible). It sounds contradictory. Why did AIDS have to take my best friend? Has God taken him home to rest?

CM

Gordon passed away at 5 am Wed. Nov 13 /96

By Church Mouse

God grant me the serenity
To except the things I cannot change.
Courage to change the things I can and
the wisdom to know the difference.

-Taken from A.A. and Al-non

October of 1996 we moved into a two bedroom wheel chair accessible apartment that had a back door to our patio and the parking lot. It was kinda useless because you couldn't unlock it from the outside to come in that way. The first week a parade of strangers pounded on the back door wanting to buy drugs! I was nervous about answering the door so I posted a sign that said “Ernie doesn't live here anymore!!!!”

The next week Gordon went for another blood transfusion. I hoped it would give him some energy. This time it didn't seem to make any difference. One evening I was sitting on the floor beside the couch were Gordon was lying. I was trying unsuccessfully to hold back the tears. "Life is so unfair Gordon, why is this happening?" He hated to see me cry. Brushing back the hair from my face and not knowing what to say, he told me "I love you more than you'll ever know!" Of course this only made me cry more.

He had set the pain pump (it looked similar to a fanny pack) on the coffee table. When I got up to get some Kleenex I walked between him and the coffee table taking the tube with me that ran from the pump to his arm, pulling on the needle in his arm. All he said was "stop hon". His patience was unbelievable. Discussing our illness my sweetheart told me "They will find a cure but probably not in our life time!" He didn't say it with anger but with honesty.

There began many days when he didn't get out of bed except to go to the bathroom across the hall. He was living on ensure, yogurt, milkshakes and sliced pear. I pushed the yogurt hoping it would clear up the thrush in his mouth, but it was so out of control he wouldn't let me see how bad it was. I now suspect that that wasn't the only thing he was hiding pain-wise and emotionally, I’m sure he could see through my attempts at treating these days as normal."If only I could do something to help him." I was constantly feeling helpless.

Gordon was scheduled for dental surgery on the 14th of November. When the pain management doctor came out to see him, he told her he wanted to put it off until February. At that time the next step was to move him to the nearby hospital or Freeport palliative care. The doctor commented that he seemed to be in good spirits today, but...I needed to find out what his wishes were. I felt this must be a bad dream! She shares with Gordon's sister Lisa and I, "I don't think he is going to make it to February." So February was stuck in my head. At least we would have Christmas together.

Again I feel uncomfortable keeping things from the one I love more than life itself. Leaving Lisa and the doctor to talk, I went back in to ask the dreaded question. "I need to know if you want to be resuscitated." There's no easy way to ask at this point. His reply was "No, I don't want to go through the pain again that AIDS caused me!" Personally the church mouse is just dying inside. I think he knew that his pain was about to end soon. He had told the doctor he was ready to go. Throughout his ordeal he dealt with everything in stride and the best that he could, excepting his fate with great courage.

The first week in November my father in-law called and he and Lori wanted to come down and tell their son that his grandmother had died. I told him with as much gentleness as possible I just could not wait for them. During this visit it was really hard for Lori to see her son losing the battle so she kept herself busy knitting. When she left the room Gordon told Dad and I both "I'm just too tired to fight." We understood. He didn't give up he just gave in.

CM

"By listening to more than mere words, I can learn much more than mere words can teach".
- Taken from ONE Day At A Time In Al-anon

By Church Mouse

By that summer of '96 life had become hell for Gordon. He could barely walk because of the neuropathy. His grandfather commented, "Gordon, you walk like you have marbles under your feet!" He struggled through the pain each day, dreading morning just to have it start all over again. Once again, mother hen is working overtime, hovering over his every move in case he fell and trying to get him to eat.

God help you if you stared at him. I would glare at you until you were uncomfortable and looked away. Part of this reaction might stem from my past, as my father lost his right arm from the elbow down before I was born. By '84 he had long ago learned to expect strangers' reactions, but I hadn't.

Sept.1996, Labour Day. The park was having a fireworks display accross the street. I had to persuade Gordon to share them with me. Putting my arm around his waist I couldn't help but notice his weight loss. My 5'8" 165 lb man (who told me his nick name in school was Herc) had dropped to about 70 lbs. The doctors decided to to put a portacalf in Gordon's chest so they could administer medications easier. Gordon's veins had collapsed from so much use. The portacalf was the size of a loonie and it protruded about half an inch.You could not see it if he had a dress shirt on but he was very self conscious of it. Unfortunately, it became infected or blocked (I can't recall which). So then he was given a pain pump as well as the time released morphine. He could administer more pain medication as needed. Gordon had been admitted three times up to this point.

During one particular visit to the hospital, my father in-law, Joe, was up visiting Gordon. Lorie, Gordon's mom, and I were having a coffee in the lobby coffee shop.When I returned with our drinks, Lorie's words came out in a rush - but, softly, almost a whisper - "my son is dying and there's nothing I can do about it." What could I say? I didn't want to deny or admit what I was having a hard time accepting. So we sat in silence.

A new doctor for pain management was added to the team. She not only looked after Gordon but her concern extended to me as well. Myself, I didn't like what I saw in the mirror so I took down the one at the bottom of the stairs. I thought I was doing it for Gordon but maybe I was doing it for me? I was losing weight, most likely from stress.

I wished I could have talked to my parents about what we were going through. I had quite a few people I could talk to... but hearing your parents say " everything will be okay" might have soothed my fears for a bit. I could never have imagined my life turning out this way! Many of my acquaintances I met at workshops, conferences and support groups had passed on. Gordon told me I needed to have faith. I heard on T.V. that faith is saying, "I will cope with whatever happens with all the courage I have."

I can't understand the point in suffering whether it is physical or mental anguish.What do you say when the pain is so bad that your husband has tears in his eyes or is violently throwing up everything he puts in his stomach? I could tell he was embarrassed if anyone was visiting as he often didn't have any warning. My brother Alex was someone who came regardless. His presence was one of love and support. It must have been extremely difficult to see what we were going through, only to return to being a caregiver to mom. He would later comment to me in private after Gordon's funeral with a tear in his eye, "even though he was so ill, Gordon always made the effort to make you feel welcome in your home."

My husband's constant companion was Simon the cat and the heating pad. Simon had picked Gordon and now, sensing something was wrong, he hung out on the back of the couch watching over the patient.

The doctors finally agree: "there is nothing more we can do". My best friend told me, "I'm not afraid of dying, but of leaving those I love behind." As well as, Gordon said that if he went to the hospital one more time... we would be saying goodbye.

Early October after the regular doctor appointment, Gordon suggested we run away. He was tired of homecare and needed a break. So I became an accomplice, so to speak! Why didn't I think of this sooner!? I needed to go home for my paternal Grandmother's funeral. My honey had never met her and his energy was low. We rented a nice room at a cozy Inn. The owner was very compassionate. When I told him that because of the funeral we would not be able to check out on time, he said, "no problem - take your time". It was great to put my feet up, enjoy some Chinese food and not have to deal with phone calls and nurses. Not that I didn't appreciate them but once in a while we had one that had her own agenda and never listened to the patient.

Dear Gordon, "I know how important it is for you to be remembered or leave your mark". No matter what it was you wanted to succeed at. "I already know that anyone who knows the real Gordon thinks highly of you." You taught me patience, tolerance and to have faith.
CM

 By Church Mouse

July 1996. Vancouver was hosting the 11th International AIDS Conference...one week of business, networking and adventure. Stepping off the plane, I was mesmerized by the breath-taking beauty of Vancouver with its mountains lying before me.

Sadness is related to the opening of your heart. If you allow yourself to feel sad, especially if you can cry, you will find that your heart opens more and you can feel more love.

-Shakti Gawain, taken from the book COLOUR OF LIGHT

The weaker Gordon became the stronger I became. (Move over superman!) There was no stopping my determination to save him. Iwas obsessed with being the perfect friend, wife and confidant. Though our lives had been extremely difficult and complicated, my love for Gordon would never waiver (I guess if you have been falling my blog that goes without saying.)My soulmate told me that "fate brought us together." He taught me unconditional love, to have faith and how to be a true friend.

The weeks following our wedding, we tried to get to know Lynn (Gordon's daughter) better, but she didn't appear interested in us. Maybe she was angry because her father hadn't been in her life or maybe it was fear as she saw how he was struggling to stay afloat.We will never know. She chose to hang out with her new-found friends. Gordon was devasted to say the least. Things got out of hand and she broke the rules which we thought were fair for an 11 year old. The rules consisted of: she was to be in by 11pm, call if she was staying with a friend in the building, no boys in her room, and she was to be in the court yard of the building after dark. She set us up by jumping off our second story balcony and running over to the park. As we followed her, coming up and over the rise, we were confronted by half a dozen teens or more, some with baseball bats antagonizing my husband to come get her! And her, grinning away like the cat that swallowed the canary! Pulling him away, we called the police and they said they would drive by.  I talked to one of the police in the park and he told me there was nothing they could do.

Lynn couldn't abide by the rules so she cut her vacation short. The first time I booked her flight she took off and missed it. Then she came to the door wanting her stuff.Gordon held his ground and told her he was going to accomany her to the airport and at that time she would get her belongings back. Instead of two months, she only stayed three weeks.

From then on, Gordon seemed to be slipping and struggling, always trying to hide the truth. Feelings of no control arise when all of a sudden your mind belongs to guilt and sadness and your body to the doctors.Where do you turn when the doctors are saying, "I'm sorry, there's nothing more we can do"? The progression of the disease and the effects of the medications were stealing the one I love from me. Gordon's life became focused on surviving, growing and taking part in his own health decisions. Instead of sitting in the dark, he was walking in the light. I saw us as wild flowers, able to grow under the worst circumstances but, even heros need to rest.

CM

On Sunday it has been 15 yrs since I lost Gordon to this awful disease. So I would like to post a poem I wrote on the one yr .anniversary. 

Today I met an angel,

Just when I needed a friend.

He walked and talked with me,

He encouraged me that my efforts must not end.

Speaking of my experiences seem to be my purpose here,

Even if I happen to shed a silent tear.

Today I met an angel,

Funny thing is he looks a lot like my friend,

Maybe he's come to help my broken heart to mend.

Today I met an angel

And when he left me I knew ...

For me there was no greater love than the love that came from you.

Today I met an angel from up above,

He shared his life, his self, his love.

Gordon slipped away without sound,

Having faith that he was homeward bound.

May your pain be gone my beloved soul-mate,

I will meet you at heavens gate.

CM

I promise to be honest with you, to trust in you and to always have respect and understand you. I will help you in times of trouble and sickness from this day forward to join with you and share all that is to come...... June /95

The day was one of uncertianty as to whether it was going to rain. It seemed like a well kept secret until the last possible moment. Before I even opened my eyes I could hear the whispering of my two little nephews standing at the foot of the bed, waiting and watching to see if there might be any movement that suggested that I might be awake. I was filled with excitement! My big day!!! I had been waiting a long time to marry my soul-mate, my best friend.

The whispering continues. Chris, 3 and J, 5, are the other loves of my life. I love being an aunt. J was especially excited because his mom Beth had bought him red suspenders to wear to auntie's wedding .So cute, so grown up. Chris had to stay with Grandma, since Dad was taking pictures and his mom was in the wedding party.

Breakfast...and I am off running. Hair appointment, pick up the flowers, check how father in-law is making out decorating the hall, drop off the booteners and corsages. Stealing a kiss from the groom, I am on the fly again.

A quick call finds the groom in a bit of a panic; apparently there are about half a dozen bridal parties in the park where we are to be wed in a couple of hours. I assured him things would be fine! (That was a switch - it was usually me that needed reassurance!)

Finally the sun was shining. I believe the angels were smiling down upon us. I was to make my entrance over the wooden bridge. The best man, Gordon's brother, (Jake) was to wave us to proceed... But we couldn`t see him from the other side of the little lake for the small trees and brush. Plus, we were to far away to hear the music! I don`t know how many times the guests indure the same songs over and over.We hadn`t planned that very well!

Finally I was crossing the bridge arm in arm with my dad. I felt like Cinderella (later my friend told me I looked like I was from Gone with the Wind... it must have been my old fashioned hat. Ahead of us, our attendants stood on either side of the steps.White balloons were tied to the benches, white and burgandy ribbon was tied around the pillars of the gazebo.Hugging my father than my mom, I assended the steps arm in arm with Gordon.We stood nervously before our family, friends and onlookers in the park. There was my support buddy, looking like a proud mother. Her happiness for us just shone on her face.

With this ring, as a sign of my love and faithfulness, as this ring has no end niether has my love for you. What greater thing for two human souls to feel they are joined for life... to strengthen each other in all labour, to rest on each other in all sorrow, to minister to each other in all pain and to be with each other. - George Elliot

TIME

The hours spent with you my dear,

Are full of hope intead of fear.

You made me feel we would be together, forever happily.

This gift a symbol of your love for me, I will keep for all eternity.

My heart belongs to only you,

The way I felt I`m sure you knew.

CM

By Church Mouse

Your sister gives you an umbrella during a storm,then helps you see the rainbow after. - Taken from "The Joy of Sisters" by Karen Brown 

What does a person look like when they have advanced to AIDS? That progression for Gordon was Mycro Ava Complex (MAC for short.) One of those nasty opportunistic infections. My sister, Val, had driven Gordon and I to many appointments but this would be the scariest.

Gordon went into the hospital and when he returned to the car he informed us that he was to be admitted right away to the hospital to be tested for MAC. I dropped him off at the doors of the hospital and assured him I would get his meds and be back soon. Heading home I started sobbing hysterically. Val tried to reassure me to no avail that "they could be wrong." Hardly able to speak I blurted out, "you don't understand what this means! If the test is positive, Gordon has AIDS!"

Everything had been bottled up for weeks and was beginning to take it's toll.Gordon was home a day later. His brother Tim was visiting and having a beer when the call came from the doctor. Indeed, Gordon had MAC. I was grief stricken. How were we going to make it through this? Again, the doctor cautioned me that the love of my life might not pull through this. Tim stayed with us for a couple of weeks, which was good for both of them as they were very close.Good for me as well, as I needed to get out for coffee with my sisters.

Gordon's parents often came to play cards occasionally, as it was hard for Gordon to get up the strength to go very far. Really, we should never have moved into that apartment because of the stairs and the long hallway to the front of the building.

There was a period of time that the medications for MAC seemed to be working for Gordon and his doctor was asked to write a paper on his case and treatment.When Beth and I would go for coffee with Val, I had a hard time focusing on conversations. My emotions were so raw and close to the surface. It never failed that when Beth would drop me off at home, the flood gates burst open and every concern, fear and feelings of every unfairness tumbled out. I would confide how fearful and helpless I felt. Sis, I love you for taking the time and depriving yourself of sleep to comfort me. It must have been hard to watch us trying to stay afloat as well as dealing with your own fears. 

"A sister's greatest gift to you is her willingness to listen no matter how late the hour." - Karen Brown, The Joy of Sisters

CM

Read more by Church Mouse

Early April of 1995, Gordon was talking with his ex-wife about child support and our diagnosis. Out of the blue, she tells him his daughter Lynn, who he hasn't seen in ten years, wants to come for a visit. Her mother cautioned us that this 11 year old had been running away. We were so excited about her coming and with the plans for our wedding wrapping up, we did not heed the warning. Arrangements were made for her to arrive the week before our wedding.

In the meantime, I received a scholarship to attend a conference in Montreal. I wasn't sure if I would know anyone, until I got to Union Station in Toronto.There I recognized many of the women from the previous retreat. Gordon arrived two days into the week - duffel bag in one hand and carnations in the other. I was so thrilled that he was there. I really needed a hug!!! He shared with me that when he left Toronto he asked if there was a smoking section on the train and was met with an abrupt, "no". A little while later, after the tickets were collected and the attendants busy in the kitchenette, the same fellow approached Gordon. "You come with me," he said. My fiance said his heart started pounding, thinking that something had happened to me and someone had messaged the train.We never owned a cell phone, so he just counted on me being at the station as planned the night before.Gordon was relieved when the gentleman took him to the baggage car and lite up a cigarette himself.The complete opposite happened on the return trip.The conductor threatened to throw Gordon and another fellow off the train if he caught them smoking between the cars once more! Big Barbarian! How could he not see how ill my partner was...duh!

Gordon's visit was to be our honeymoon because we would soon be back to living cheque to cheque. Conferences are were a bit stressful for me, not knowing what I should be taking notes of. Some experts have very heavy accents or they talked faster than I could write.

Our evenings were wonderful as we explored old Montreal, enjoying our dinners on some quaint little patio close by. Returning from a busy day of note-taking and and networking, I found candles adorning the table, and wine chilling. Gordon had made us steak dinner in the kitchenette. Someone must have pulled some strings because normally conference participants usually have to share a double room. But there we were, enjoying ourselves with everything we needed. Our suite had a great stone balcony and an amazing view of the old buildings around us. I could never remember the name of the hotel, let alone pronounce it. I only got lost once.What a wonderful week.

Soon after, I was heading to the airport to pick up my future step daughter. My mother-in-law to-be had plenty of ideas of where we could take her.Waiting patiently in the baggage carousel, Gordon was visibly nervous and most likely had a smoke in his hand. He had not seen her since she was one. At 11, she was traveling across country from Alberta to spend two months with people she didn't even know. Scanning the baggage area, I spotted a tall, lanky, freckle-faced girl with strawberry blond hair, looking for her bags. I could tell by the shape of her eyes and nose -  there was no mistaking who her father was. So I give him a nudge to go talk to her.

Getting settled in the car, we decided to take her to Ontario Place for the festival of lights. My mother in-law always enjoyed the gift shops. We bought strawberries to eat while we waited for the show to start. It was very awkward because she seemed to prefer to hang out with me or sit off by herself. She wasn't feeling the best since she got off the flight, so we got her some Gravol.Gordon didn't want to push her to talk. This was going to be a tough go.

Talking to her as she unpacked her suitcases, I noticed she didn't have a lot of clothes. But her bag contained empty liquor bottles of all different shapes and sizes. Her prize possession, though, was her ghetto-blaster.The first week I took her shopping for a few over-sized tee-shirts. But what did I know about what girls her age would wear? She quickly got to know kids in our building that soon became her allies. So right away we established some rules.

CM

 By Church Mouse

They say that God never gives you more than you can handle! Wow! He must think I have shoulders of a linebacker!......Then again, he knows the strength of sisters! As we are introducing our new kitty to his new surroundings, I receive the news that my mom has been diagnosed with cancer. I was many times torn to where I should be - here, for my fiance, or at home, looking after her. I was soon assured by Beth that Dad and my brother were doing the best that they could with the help of home care. She told me I had enough on my plate to deal with.

When we went home for Christmas of '94, it snowed so fierce that we had to stay over night. Some of the family had left earlier. But Mom still had a house full. Even though the furnace was blasting out heat, Gordon couldn't seem to get warm. He was shivering and shaking; being an old farm house, it tended to have a few drafts. Gordon was taking 40 pills a day. Some were to prevent opportunistic infections and the rest to slow the progression of the virus. He was put on AZT - one of the first drugs they started patients on - and it was only available at the hospital pharmacy at the time.

It was a nice February afternoon when I started off for the ten minute walk to the hospital. I knew that I had had a barking cough for the past couple of days, so after retrieving the meds, I walked into the emergency room, sinking down into the chair accross from the intake person. I was hardly able to speak, because I was trying without success to keep my emotions in check.When the nurse saw how distressed I was, she ushered me over to a more private corner of the room. Inquiring as to why I was sobbing, I told her that I didn't think I could take another step. I told her that I was caregiver to my best friend, that I too was HIV positive and about my mom as well. They sent me for a chest xray. Sure enough I had bronchial phenomena.

I returned home to find a very concerned partner who wondered why a 10 minute walk turned out to be 5 hours. He told me he was about to start calling around to see if I had gone to visit family. Up until this point Gordon and I had never talked about what would happen if I got sick. I think It was just too scary of a possibility.

When I had shingles, he was still able to look after me. I waited a long time to start on the HIV meds. I knew that once I started I would be on them for the rest of my life. I had to reassure Gordon that I am apt to get the flu or a cold like anyone else it didn't mean that I wouldn't cope. On one of my regular doctors appointments, our doctor disclosed to me that my future husband could die in the next six months to a year if he acquired one of the AIDS defining illnesses. He told me Gordon's CD4 counts were a disaster. Three days until Christmas... how could he do this to me?

Plans for the wedding were still moving ahead. Neither of us was involved with any particular church. My future mother in law suggested the pastor at the Royal Canadian Legion who was a friend of Gordon's granddad.We set up an appointment. Not saying much and appearing a bit cautious, Gordon explained to the pastor that I was afraid he might have a problem with us being positive. "Not at all," he said. It was that fear of stigma raising its ugly head again. Sigh of relief.

Now on to getting the hall, a band, and the cake. I was honoured that Beth was making my dress.The groom to be was probably sick of hearing the wedding march and many other songs played over and over again, while I contemplated which ones I liked. The only request he had was he wanted a suit with tails the kind that remind me of a pianist.

Our rings weren't new, but that didn't matter. I was marrying my soul mate.Someone once asked me, "why would you get married if you are both HIV positive?" My response? "Why not!"

CM

NEVER DEPRIVE SOMEONE OF HOPE; IT MAY BE ALL THEYHAVE.

Taken from the little book of hope.H. Jackson Brown Jr.

Read more by Church Mouse.

I've learned that .................................angels really do exist on earth.

H. Jackson Brown Jr., the book On Hope

Even though I was immersed in everything from speaking in the schools, attending workshops, conferences, as well as trying to be there for my mom who was now diagnosed with cancer, at this time my support worker thought that I might benifit from having a support buddy, with whom I could share my feelings with (wise lady!) Lena turned out to be an awsome friend. We did coffee, shopping, we took part in a ceramics class. I didn't have a whole lot of patience for the tedious job of painting our projects. But I cherished the time my buddy and and I spent together. Lena went above and beyond and extended her support to Gordon as well. She was right in there, helping me with the plans for our up-coming wedding. Lena and her friend ran a women-focused progam on a local radio station.They invited me to share my story of living with HIV.

Checking the mirror at the bottom of the stairs before I left the house for the radio station, I heard a low wolf whistle - the kind you would hear at a construction sight. Blushing, I found Gordon with a wink and a smile. He wished me luck an assurred me he would tape the brodcast.

Off I went! Having planned to use a pseudonym, I wrote in big letters my new name on a piece of cardboard afraid that Lena would slip up.Things were going really well, Lena was asking me prepared questions. At this point I confessed to being afraid that I was being judged. During the break the host relayed a message from a viwer that wanted to asure me that nobody was judging me and that I was diong a great job. To this day I don't know whether it was my partner or not. He wouldn't confess. Coming to the end of the program the host looked directly at me a thanked me by my given name. I destintly remember my hand flying to my mouth. Now what!!! Too late - it was live! And that pause said it all. No back paddling here! We laughed it off after.

Returning home, Gordon had a big grin on his face and a welcome hug. He took a step back and shaking his head, he said I thought that might happen. I was so pleased that he was listening. He was always supportive of my efforts to educate.

The following summer I left the speaking behind and Gordon and I joined my sister Beth and her son, J at a cottage near Kincardine. J was only 4 and sis was six months pregnant.We had a great time entertaining J, strolling along the beach and taking the little train arround the park. It was a nice break from our lives living with the virus.

One evening, we were sitting around the camp fire. I was laying on a log, looking at the stars when J came over anxious to tell me something. I cautioned him not to spill my can of coke that was sitting on the ground. He took two steps back and fell directly into the campfire. I couldn't get up quick enough. I will nerver forget the look of shock on J 's face. It seemed to happen all in slow motion. Gordon grabbed him and rolled him around on the ground. Luckily J had just been changed in to pants and a sweater, which protected him. Also the wood that had just been added hadn't caught yet. That night I saw how well my honey handles crisis. You will see it again later in my stories.

All is not doom and gloom - hence, a few months later we were blessed with the arival of Christopher.

Angels on earth ......hell yes! CM

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By Church Mouse

While trying to manage Gordon’s symptoms of HIV, which were starting to show their nastiness, we were invited to celebrate his grandparent’s 60th anniversary. Gordon surprised me with a small corsage he had made for me, to make me feel part of the family. At this celebration my future father in-law noticed me twisting my ring around on my finger and trying to hold back the tears that were inevitable. He inquired to what was upsetting me? I shared with him how frustrated I was that Gordon refused to change his lifestyle to live longer. This man, fighting his own battle with cancer, told me with much concern, "none of us knows how long we have, so wouldn't it be better to do things that make us happy? Church Mouse, please take care of yourself, we love you!"

That summer, Gordon told me, "I know I am going to die from AIDS." What could I possibly say? How does a person respond to such a statement like that? I couldn't deny him his feelings. More tears.

With that in the back of his mind, we ventured down to our local pound. I had my heart set on a kitten but the cat beat me to the punch. As I am laughing and giggling at the antics of the kittens, Gordon drew my attention to the cat behind him who was reaching out and pawing at Gordon’s shoulder as he stood with his back to the cage. He was at the end of his allotted stay... we couldn't possible leave him. So off I went to fill out the paperwork. Chester came riding out on Gordon’s shoulder looking like royalty. He was a 5 month old black Burmese with green eyes that often looked yellow. He turned out to be a challenge all his own.

Life became a balancing act of doctor’s appointments, home care and hospital stays for Gordon. Night sweats, fevers, chills and headaches. We were now seeing the same doctor. Each one of Gordon’s appointments were so stressful for me. You could probably hear a huge sigh of relief throughout the whole office if there were no new concerns.

Arriving one day in the fall to get a chest x-ray done, Gordon was wearing his winter coat done up. While he was handing over the paperwork some smart ass teenager said, "It’s not that cold out, man!" Without hesitation, I whirled around in anger too confront him. "IT IS IF YOU ARE SICK!!!"

By the look on his face, he just wanted to slither right on out of there. I was livid and the nurse quickly ushered us into the back and into a change room. As I was helping Gordon with his garb, he commented, "wow mouse! Where did that come from? That certainly wasn't you!"

"He got what he deserved and I am plain tired," I said. But what I really meant was, I am tired of people staring because you have lost so much weight, staring because your cheeks are hollow and you walk with difficulty.

We were sent to London where the specialists were. I wait nervously as Gordon is examined. Looking around the room, AIDS seems to jump of every magazine, newsletter, and piece of literature. I feared that Gordon would be told the worst possible news.

After a seemingly long time, the doctor appears in front of me informing me that Gordon wanted me to join them. This can't be good. My fears escalate rapidly. I am numb, my heart racing. I look to my partner for reassurance. His face was void of any expression. The doctor started off by telling us that if Gordon had waited until he had full blown AIDS to come and see him, he would have told him, I sorry there isn't much I can do and life expectancy would only be three years. Gordon was given a prescription for AZT and some preventative medications. Finally I saw some relief on Gordon’s face. The doctor assured him he didn’t have AIDS and they would try to prevent it, and hopefully with the new meds they could expand that three years to six. The doctor sounded pretty confident. He told his patient, "you look pretty good for a man with a CD4 count of 70."

I was frozen in my chair. The whole damn conversation seemed like a made for TV. documentary of someone else’s life. I just wanted to walk out and never come back. Gordon handled the news better than I did. I felt like a glimmer of hope was all we were getting. We're not out of the woods yet, babe!

Dearest Gordon
I love you with every part of my soul,
You are the best thing that life has given me.
I admire your strength and courage,
I am afraid of losing you, afraid of the future.
I don't know how to cope,
It gets harder every day,
I hate to see you in such pain.
Please don't ever stop loving me.
mouse

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By Church Mouse

"You must feel something to know what it is..."

-Ceanne DeRohan Taken from the book THE COLOUR OF LIGHT

What that was ...........love with no end. A few months after my ordeal with shingles I came home to find our home in near darkness, except for a few burning candles, a bottle of wine and a partner who looked like he had the secret to the Caramilk bar! After ridding myself of my coat and joining Gordon on the sofa, he timidly asked if I would marry him.............................Of course - yes! yes! There was no other answer. Our personalities fit together like two pieces of a puzzle needing each other for support, friendship and faith in what lay ahead of us.A promise ring was on my finger and the next week he suggested we elope. But I had my heart set on a wedding where family and friends were present.

Shortly after our engagement, I was invited to my first ever retreat for HIV positive women. Finally! The bus was loaded with 24 women from all over Ontario and a three week old baby girl.We were off to the country for a much needed break from our lives as caregivers, volunteers, lawyers, activists and mothers. Out in the middle of nowhere, amongst the fabulous reds, yellows, oranges and browns of autumn. A place so peaceful now full of life. Here I felt comfortable and welcome. At last a chance to be normal! I almost forgot what that felt like!

I proudly wore my new ring and Gordon's picture was always close to where I slept, which was in a sleeping bag on the floor of the living room. To an outsider it would have looked like a pajama party. I wondered how this was going to work with so many women sharing a chalet type cottage.Volunteer cooks coming and going and of course I can't forget the golden lab that seemed to know when someone needed his guidance. I remember the first night, heading back up to the cottage from the bonfire by myself - there he was, right in front of me like a becon of light treading a path he probably could do blind folded.

Evenings were spent getting to know each other while time seemed to stand still in our little corner of the world. I felt so relaxed knowing I could talk freely about my hopes, dreams, and fears with others who understood. There was lots to do, from canoeing, swimming, campfires and a sweat lodge. Little did I know that I was about to have my first experience with spirituality. The first day we were instructed to gather long branches that would be tied and erected like a tee-pee. We covered it with tarps and blankets. In front of the tent a fire had been burning all day. I thought, "how odd, having a fire going in the daytime." Not all women wanted to take part in the sweat lodge so they were off playing cards or watching a movie or just enjoying the sunset. I patiently waited as the rocks were taken from the pit and placed in another within the tent.After disrobbing to your comfort level, one by one we entered what could only be described as a SAUNA. The flap was closed and we were immersed into total darkness. I could feel my heart pounding, in anticipation.We were told to "feel free to leave at anytime". With that being said, one of the women poured some water on the rocks and shared something from her own life. One by one, fears, concerns, feelings, disapointments and prayers were heard. I felt honoured to be witness to such an out pouring of emotions. I was sweating from every inch of my being. I could hardly breath! When it was my turn to speak......... all I could master was the sernity prayer. The tears flowed as I thought how complicated my life had become.What would the future hold for us? All of us! Here was proof that there were indeed other women infected by this virus. Some had only know a few years but others were more recently diagnosied. I cried for those whose lives had become unmanageable, my heart ached for those who had gone before us, more tears. It was so dark that I couldn't see the woman beside me, but when she squeezed my hand I knew she understood my pain. Everytime someone spoke, more water was dashed upon the rocks. It was way too hot I. had to leave. Even though I was relutant to go, I felt like the air had been sucked out of my body like a deflated balloon. I left the hissing rocks and my inhibitions behind. My new friend Karen asked me, "how was it, mouse?" "Overwhelming," I replied.

During the time in the sweat lodge I was able to seperate myself from my real life problems back home. I really felt that some part of me was healed that night; maybe for just a short time.This incredible experience, even though it was hard to explain, will stay with me forever. I appreciated our hostess for opening her heart and her home. Today it is hard for me to look at those pictures from that weekend in '92. For some of those women fought and lost a hard battle.God bless, my friends.

CM

By Church Mouse

Who would have thought that a timid and self conscious mouse like me would get up and tell my story of how HIV/AIDS has affected my life? I grew up in rural Ontario, where we planted corn, had a huge vegetable garden and pigs to feed. I think I had a pretty normal childhood. I attended the local high school when AIDS hadn't even been heard of yet! So....it sort of makes sense that my first exposure as a HIV positive speaker would be to a grade nine class in Paris, Ontario. My hands shook, my knees wobbled and my brain was mush. My thoughts were .....OMG what have I got myself into?!

Many eyes were focused on me, anticipating my disclosure and putting a face to this disease that they were just hearing about. In those early days I too was struggling to understand it myself. However, I certianly could tell them how fearful I was, and that my biggest support came from my partner, Gordon, who was also positive himself.

You could almost hear a pin drop when Linda, our Support Worker, introduced me. The students seemed leary about what they should ask, so Linda decided to start the dialog by asking me some questions. I was grateful for her help. You see, for me, imaging the audience in their underwear wouldn't even come close to steadying my nerves! (Over the years, however, I have learned that the audience wants you to succeed; they are not as critical as you think they will be. I have also learned that pauses have affect.)

It is February and I am anticipating another opportunity to share with another class on Monday. It is the weekend and suddenly I have what I thought was sinus headache, followed by intense pain. Seventy-two hours later I am dignosed with Shingles.'' Shingles!!! I'm not over 70 how can this be? Who knew!!!"  I guess my body was trying to tell me something.....I couldn't handle any more stress! Yep! I got the message... or did I? Five weeks of unbelievable pain and itching, both my eyes swelled, my forehead was infected from my scratching. I showered at least 6 times a day because the heat gave me some tempory relief. I was put on an antibotic and demerol.Whoo hoo! I would be talking to someone and doze off in the middle of a conversation, waking minutes later to continue my sentence. I walked off the back porch like I was walking on water, nevermind the three steps that were there. Gordon took good care of me. And the students sent best wishes. Most people you hear about who have shingles usually get it around their mid-section, but I just had to be different! The virus followd the nerve endings in my forhead, around eyes and up into my scalp. I was told by a Doctor just this year. that I was lucky that I didn't lose my vision.

Surprisingly, the scars don't bother me because I know that Gordon and my friends and family love me unconditonally.

To me they are signs of the battle I am still fighting. As for public speaking again, I'm not sure right now... maybe somewhere down the road.As for this platform, I like it alot.

By Church Mouse

How does someone cope with the dreaded news of being HIV positive and keep moving forward?

It is 1991, AIDS is thought of as something that only gay men were getting, and certianly not women and children. I don't remember if any of the celeberties talked openly about AIDS or maybe that came much later. Rock Hudson was the first I remember hearing about.When the movie Philadephia came out, I couldn't bring myself to watch it I was living with my own fears. In the weeks and months that followed our diagnosis I sought out support. I called our local AIDS committee and the gentlman on the other end of the line listened patiently while I spilled my story of diagnosis and the doctor's callous response. This gentleman, knowing that he probably wasn't going to get this timid mouse through the agency door for support, offered to meet me at a local coffee shop. This started me on the road to meeting other PHA's and on to telling my story publicly.

I am still working at this time in a factory making styrofoam plates for resturants.The stress of keeping part of my life secret was taking it's toll and I came down with phemonia. The flu is just the flu, unless you are positive. Then it can become a "what if''. As for work, I made the biggest mistake I could have. Because of fear of rejection, not knowing who I could confide in, and fear of seriously injurying myself, I quit my job instead of taking long term leave, therefore losing my benifits.

Over in our personal life, it took me along time to persude Gordon to get tested. I think that he felt that once the words were spoken it would become a reality. Since niether of us had any serious infections at this point, we decided to wait, but ultimately he did get tested. We waited an agonizing five weeks for his results to come back.

Living a double life was becoming impossible. It was time to share with family and friends. Deep breath......that's right Church Mouse just blurt it out!Outstanding!!!! Now you got the nieces all crying.Ooopppsss! My oldest neice asked, "how long I have you known?" "A year I say". "Oh mouse, you should have know that we are here for you and always will be no matter what."

Mother was not so easy. I took backup - my support worker from my agency - under the guise that we were just up for a visit. Mother wanted to talk about her garden, wanted to know where my friend was from, talked about the weather, who had a baby recently, etc., etc., etc. I was procrastinating. I didn't want her to blame my partner and I know I put her in an awkward position by bringing a stranger into our home with bad news. Each time my mother turned away to do something in the kitchen, Linda kept motioning me to go ahead....and her motions were getting more exaggerated each time. I would have started laughing if I hadn't commited myself to doing this. After I explained my situation, mother's body language told us that we needed to give her time for it to sink in. Since she wasn't making eye contact and she told my dad that I had a blood disorder.We made our exit.

Our families stood by us. Their support was amazing. I know how hard it was not to want someone to blame.When it came to friends, Gordon's experiences were not as good.One of his good friends walked right out of his life. Another time, Gordon was working on a job landscaping and when he told the boss he had an appointment in London, the fellow suggested in a very scarcastic manner and in front of everyone, "he must have AIDS!" (That's were the HIV specialists were.) Go figure! How did he know?

Mostly we handled HIV together the two of us like soliders pressing on into battle.Winston Churchhill once said, "knowledge is the key to winning a war," so we armed ourselves with knowledge and support and kept on moving.

By Church Mouse

In my previous blog, I apparently put the cart before the horse so to speak. In order to have my stories flow, I will share with you how I met my soul mate/best friend, Gordon. It was Halloween of 1990. A local pickup hockey team was hosting their annual dance before the season started. I hesitated about going because I had just come out of a bad relationship,but then again I didn't want to sit home and watch the paint dry. Not having put much thought into what I was going to wear as a costume, I quickly scoured the place looking for and borrowing accessories such as cameras and sunglasses, suntan lotion and a map.The final outcome was a tacky tourist ensemble, which included a highly unusual sunburn considering the fact that it was the end of October. This I achieved with a excessive amount of makeup.A busy, multi-coloured shirt and a mismatched pair of shorts completed my look. I was hardly a damsel in distress, except maybe for some fashion advice! And off we went.

Part way through the night, as I am chatting with friends and munching on snacks, out of the darkness emerges... my knight in shining armour? Wait a minute.....Oh, great  - he is wearing big red shoes a fuzzy red wig and .......of course the trade mark red nose! Awwwwww. Good grief, and he's coming my way! Five minutes ago I was dodging a guy in army fatigues who wreaked like a brewery. I've nowhere to go we have made eye contact. First words out of his mouth: "Don't I know you from somewhere? I 'm sure we've met!" Being a bit annoyed at his unoriginal line and not wanting to get involved or hurt once again, I sort of gave him the brush off by saying, ''well that was original!" Gordon must have seen something beyond my flamboyant costume and the sarcastic attitude because his persistence prevailed and we briefly got to know one another.

Before we knew, it my ride was leaving with or without me. Since I was sitting close to the wall in a booth, Gordon wouldn't let me out until he got my number.That wasn't a problem because most of the players knew my sis and her husband as he was also a team member. Unknown to us, that night something wonderful was set in motion and the fortress walls that my knight had built around himself slowly started to crumble and over time turned to sand, sliding to the ground to reveal a man of great strength and character. His love, support courage and faith has kept me afloat and pushes me to meet the challenges of being left behind.

Miss you always, Gordon.

A reflection on the past, part one: A women’s intuition

By Church Mouse

It is fall of 1991, I am working in a little bakeshop/cafe. Things are great, I like my job, my boss and I have just moved into a funky little apartment with my partner Gordon, in the top of a house. The reason I call it funky was because it was painted a hideous colour of hot pink with black wall paper. Ouch! Having just finished a course in interior design I could see it had potential. I was up for the challenge. Little did I know that the challenge was going to be a intruder in our home, not invited, not expected, and not talked about enough previous to its arrival. AIDS: the monster at the door.

Why I got tested baffles me to this day. I feel it was women's intuition. Back then AIDS was referred to as something that only happened to gay men or if you had a blood transfusion or were using drugs. And certainly not if you were a woman.

After urging from family, I went to see a new doctor. After my physical, he told me he couldn't find anything wrong. I told him I was concerned about my rapid weight loss and feeling crappy most of the time. He informed me, " I can't find anything wrong with you!" Strangely, just as if I was saying pass the pepper, I said, “Maybe you should do an AIDS test?” Surprised by my request, he fumbled around with some papers and reassured me I didn't fall into any of the risk groups. Bold as could be, I said, “maybe you should do it anyway.”

So they drew blood and I left feeling that the tests would come back negative. So I didn't mention it to Gordon, went to work and carried on. Just prior to that first doctor’s appointment, Gordon and I had been sitting at home out of boredom I said "I wish something exciting would happen". Gordon replied, "watch what you wish for, it may come true".

Just two weeks later a phone call sends me back to this same doctor. Still not worried, I wait patiently. Finally he arrives with my file, no tell tale signs that his news is about to ruin my life. He matter-of-factly said, “you have HIV. There is a 50% chance you are going to have AIDS. Your partner must have been unfaithful.”
Unfaithful bloody Hell!!!! He doesn't know my partner from Adam. AND..........WAIT FOR IT… Wow! “You are my only patient that has tested positive!” Whoopie! What did I win??????????????? I can hear Bob Barker now, saying, “give that young lady a brand- new- car.!!!!!!”

Such a compassionate man. He gave me the number for Public Health and walked out. Compassion might have killed the old bugger! Obviously he wasn't going to risk it! Waiting there to see if he might return, I felt nothing but a whole lot confused.

The nurse entered the room with a very concerned expression on her face. She inquired if I was okay. My response was "you know, don't you?" She replied, “I did the blood work.” Could things get any worse? This was my sister’s life-long friend. She assured me that she was bound by confidentiality.

I left that office to meet a co-worker for lunch… needless to say I wasn't interested in eating and had a hard time following conversation. As quick as I could, I got myself out of there. The numbness seemed to be replaced with angry tears. My head was trying to figure out - what next? My heart was breaking because there was one more person who had to be told.

Walking felt like I was wearing boots full of cement. When I gradually arrived home, Gordon asked how did my appointment go? I burst into tears telling all that the doctor had said. Hugging me close Gordon calmly said, "we will deal with this the best that we can." So that intruder that entered in to our lives was about to get a swift kick in the arse and out the door! Discussing our future together we decided that knowing how we were infected was not going to change anything for us so we never pursued the issue. That way people cannot put us into a category to justify how we acquired HIV.

At the end of the day I was safe in the arms of the one I loved and trusted.

Introducing our newest blogger, Church Mouse!

"To blog or not to blog?" How it began for me:

I was at home one evening playing a computer game when I recieved an IM from my friend, Chat Junkie, inquiring if I would consider joining the team of bloggers at ACG.

Hummmm.... I had very little knowledge of what blogging was and a bit skeptical as to who would want to read what I have to say? Something else was nagging at me. Do you remember our parents saying. "if your friend decides to jump off a bridge are you going to do it too?" Well no, for one thing this little critter hasn't got her wings yet and can't swim either."

But seeing how happy and confident Chat is since he jumped out of the frying pan and into the fire, I want that for myself.

Now don't confuss me with the church lady because that's not who I am, that would be my 80 yr old aunt (kidding). The name "church mouse" just popped into my head - and decision made. I once asked my sister to describe my personality. She told me "I was outgoing in an understated way". I am "able to speak about HIV and AIDS in a large or small group but it is not an overpowering or all knowing prescence". I am not one to see the cup half full or half empty I just see the water in the cup.

I, the church mouse, am a woman in my early fifties. Diagnosed in 1991, I am a long term survior who has many experiences and stories I 'd like to share with you. I am sure that you will soon understand the little mouse with the big heart.