It's been twenty years since my diagnosis hit the stage,
back then my anger hovered close to rage.

I wasn't the only one to soon find out,
what this disease called AIDS was all about.

My partner and I fought our illness the best that we could,
my soul mate my best friend stayed longer than he should.

I tried to keep him to myself,
regardless of his failing health.

When his life came to an end,
I didn't think my heart would ever mend.

Year after year the vigils passed me by,
I steered clear not wanting others to see me cry.

I had a vision in my mind of people mourning in an overwhelming dark despair,
I just couldn't see why others would somehow want to share.

Many times my peers would suggest, "You should go!"
"It's not for me!" I'd let them know.

When invited to share a poem at the vigil last year,
I don't think my friend knew that I was facing my biggest fear.

Not of public speaking, but of the sharing of my own pain,
compared to others my lose might appear as small as a shaft of grain.

When arriving to hugs and laughter and smiling faces,
I was thrown back a couple paces.

Wondering to myself ,”was I at the right place or not?"
This didn't feel right amongst this happy lot.

I began to relax a bit I must say,
When my friend happily led the way.

The potluck before hand helped settle my nerves somewhat,
But when the service began the feeling switched to an uneasiness in my gut.

I didn't know what to expect at this event,
I was certainly out of my own element.

The grand choirwas such a beautiful sound,
When my name was called,I felt my feet hit the ground.

Up to the front I went and all went fine ,
all the way through to the very last line.

Since that was my very first vigil,I want to say,
My precept ions were all wrong all along the way.

A vigil not only gives us a chance to remember those who've touched our soul,
We mustn't stray from our precious goal.

To celebrate the lives each one lead,
Leaving memories of where they had once tread.

To rejoice with the survivors as they soldier on each day,
Inspiring hope along the way.

Gratitude for our families, friends, partners, staff ,volunteers and peers,
Who've shared our hopes, our challenges and our fears.

I am grateful to everyone for showing me the light, through the darkness to arrive here,
Even if I happen to shed a silent tear. CM

Looking back 1997 was one of the most stressful years since I lost my husband Gordon in 96. My grief and depression would hit me like a sudden storm. My grief counselor Patricia told me I needed to slow down. I had done a lot since Gordon died. Part of that was sharing my story at many schools; the First Nations reserve and Mutual Live Inc. Company. I pushed myself to the max, not wanting to deal with my loss. I felt like I took one step forward and two back. Patricia assured me that this was the normal part of grief. She commented, ”Mouse you seem to be running away from grief!" I was thinking Duh..........of course I was, it was just too scary a place to be! She told me that if I could not get up to the hospital for our session she would come to me.

My care team still came regularly during the week and my brother Alex came on the weekends. I was still dealing with night sweats and chills. My mouth finally seemed to be healing. The Predazone had left me totally exhausted. My G.P. told me I look better but the blood work showed I had become anemic from the AZT, my HIV medication. I had become fragile like a piece of china. I didn't want anyone to know how fearful I was of walking up town in case I couldn't make it back on my own. My appetite disappeared. It took all my energy to get off the couch to get a drink of water. Thank God for my care team! Rena was the cook in the group and she knew that I didn't like the looks of tofu so she tried to disguise it, knowing that I needed the protein.

It was suggested by a friend that maybe I should see a chiropractor about my sore muscles. I walked into Steve's office. I was a mess; weak, emotional and felt like I was unfix-able. I was booked to see the chiropractor’s partner for a massage before each treatment. While Jessie gave me a massage I would spill all my concerns about my health and that of my Mom. Today I credit these two people for being a big part in saving my life.

As the fevers seemed to calm down my next stop was the dietitian. I looked like a walking skeleton. I don't have a mirror in my bedroom because if I did I probably won't get out of bed. It is hard to put on weight when you don't crave anything. I started b12 shots from the home-care nurse. I wondered where she was going to stick the needle as I had hardly any muscle-" Oh my hip....lovely!"

At this time another person was added to my home care team. Katherine was a physiotherapist. She had the loveliest Liverpool accent. We had an immediate connection. She took the time to listen to my loss. She wanted to know what my husband was like and she couldn't help but notice our wedding picture sitting on the end table. Her job was to access my needs and make suggestions to make my life easier. I had been complaining about having no butt and how the porcelain tub was unkind to my body. The next day I found Katherine at my door holding a piece of foam half the size of the tub. It worked great so when I was done my bath I could just tip it on its end and the water would just drain away.

I could not avoid the mirror forever, I wasn't sure I knew this person any more. The image starring back at me looked tired, sad, and lonely, like she couldn't go on. Years later talking with Patricia the Chaplin, she admitted that when I first came to see her I was literally at death’s door.

Support group was starting our fall session and Mary our support worker told me I could bring a pillow and blanket. She knew how cold I got. They told me it was warm out, but I was freezing. I was fearful, I didn’t want to die and I wondered if those that love me thought I would be next.

I got a phone call from Dan who booked the speakers from our agency for the schools. He was inquiring as to whether I was ready to get back out there. I told him, "no I have to look after me first”. He told me, “Church when we speak together we are a good balance. We may have similar situations, but our stories are so different." When I speak in the schools I forget how I feel physically but I am very aware of how I feel emotionally. When the students give me a hug I feel accepted. So I push on so that I can get back to doing what I love best- talking with students about how I live my life with this virus. CM

 

 

Fast-forwarding to Aug.2012, I was given the opportunity to return to the camp I attended last summer. The purpose of this getaway has been to create a safe place for HIV positive individuals, their families and/or their partners to meet other people dealing with the same disease, issues, concerns, or to just have a break from doctors. It is also a safe place for those of us who are hiding our diagnosis back home for any number of reasons such as fear of rejection, discrimination, and possibly employment.

Last year It took quit a bit of coaxing by a buddy to get me to try camp.Camp at 53!? At first I could not see myself sleeping in a rustic cabin, meals in a noisy mess hall, and I imagined being bombarded by hokey rules! That week turned my little world upside down. I say my little world because I have one foot in the HIV community and one foot outside that community. It seems like the number of HIV negative friends in my life has gotten smaller all the time, for reasons I have not yet looked at.

When I returned from camp the last time, Beth said I talked about the feeling of love and acceptance and belonging for weeks after. So this year, when she accepted my invitation to join me in that rustic cabin I was thrilled. A sea of staff and volunteers awaited our arrival that final week In August. Their cheerfulness and smiles were contagious. I couldn't wait to introduce Beth to people I had met last year and vice versa. Friends were made, laughter was shared and conversations flowed. I loved the beach the best and the campfire on it. The star-lit nights must hold many wishes. The trees must draw in laughter and tears every year, tears of happiness and that of sadness - mine especially the year before. I had arrived at camp with personal baggage that I was not even aware of. A look of knowing from someone who cared got the ball rolling by inquiring as to why I was fighting back tears? I guess because I was so happy to be there. I hadn't realized this place reminded me of the retreat I had been at 13 yrs earlier when Mom took her final trip to the hospital and passed away from cancer. As the tears flowed, no one seemed to judge me, or told me to pull up my socks and move on. They just sat with me and listened (much like Beth does) until there were no more words. It was great having Beth there this year to share everything. She even participated in the talent show, humoring us with antidotes from her grade 1 and 2 classes over the years. I had backed out because I hadn't quite finished the following poem I wrote for her.

It turned out that the food was great, as was the talent show, I slept really well, and I could tolerate a few rules. I came back both times with a renewed spirit, memories of beautiful sunsets and awesome friends. In a place set apart. CM

SIS
You've been by my side from the very start,
through troubled waters and broken heart.
We traveled the road of tortured grief,
loss of family and friends in disbelief.
When things were hard for me to bear,
you picked up the torch and showed you care.
We are more than sisters, we are each others friend,
you rise to the occasion for support, challenge or to quickly defend.
When I am side-tracked or lost for words, your encouragement sets me free,
you have the knack for bringing out the best in me.
You coming to camp made my week the best,
with your laughter,support and tears,
with my fellow campers my peers.
Even if this opportunity is rare,
our side bye side footprints will always be there.
A big thank-you from my heart,
for sharing with me A Place Set Apart.CM

Sisters function as safety nets in a chaotic world simply by being there for each other.

- Carol Saline

I had a sleepless night, worrying about what the HIV specialist was going to tell me about the sore in my mouth. Beth, my sister, was going to accompany me to my appointment in Toronto. I guess it is better to share the bad news as well as the good. If I wasn't so scared, I would have rescheduled if I could have but... I needed to know what was going on. All the way on the Greyhound, the silence between Beth and myself was deafening. My head was spinning. What was she thinking, was she as terrified as me, that the sore in my mouth might be cancerous?

Finally we are sitting in the doctors office. I felt that both of us were holding our breath. The doctor told me that the new combination of HIV meds I was currently on were working. Beth was impressed with my doctors straight forwardness and compassion. My doctor gave me a hug and told me, "you can stop worrying now. The sore in your mouth turned out to be an ulcer which can be treated with Prednisone." She also told me that I was her miracle patient on my way back from a CD4 count of 16 and weight of 89lbs. Once the Prednisone (a steroid) started to work, the nightmares began (literally) as well as night sweats, fevers and chills. The paranoia this drug was causing was keeping me from trusting the one that was always there for me... Beth.When she came to visit, I pleaded with her not to leave. I was afraid to be alone, afraid that people were not telling me the truth about how sick I was.Beth had small children at home and also had a job.We finally agreed that if she went and got me some movies that maybe I would be able to relax and sleep. And of course she was only a phone call away. My sisters Beth and Val are as different as chalk and cheese. Beth is hands on - let's find an answer, lets get er done! Supportive and always encouraging. Val is more - let's wait and see... then act. Val does what she can to get me to appointments, kitty to the vet - the practical stuff. She is there if I need her but... I feel there is part of her that is guarded.

It must have been hard to see me losing weight and struggling to live with my disease. I first noticed this in Feb. of '97 just before I went to Florida with my in-laws.Val had accompanied me to find a bathing suit. The look on her face when I stepped out of the dressing room and she could truly see how this disease was ravaging my body. My tiny arms and toothpick legs and no butt would surely give people the impression that I was an IV drug user or anorexic.The look on Val's face was one of fear mixed with shock. Almost like she was seeing the extent of my illness for the first time. The next day I stayed over at Nancy's place (a friend from my support group) we were planning a garage sale for the next morning. I took her bed upstairs but couldn't sleep. I was freezing and exhausted. My bladder was killing me but I didn't have the energy to get out of bed. I was just to weak.When Nancy came up to wake me she was surprised to see that I was awake. She helped me out of bed and to the washroom and down the stairs. I thought surely I had pneumonia. My temperature was 102.6. It was Saturday so the on-call doctor told Nancy to give me a hot drink, some Tylenol and one of my Lorazapam to get some sleep. Nancy spent Sunday night with me and took me by cab to my doctor's office. I was lying on the examining table and the doctor asks me "do you think you are going to die?" Nancy is crying. Without opening my eyes I said "I don't know." She sent me for blood work and a chest Xray. The worst part was when an inexperienced nurse shoves a needle into my vein to check the oxygen level in my blood to check for AIDS related pneumonia .She then says "oh that's not suppose to swell up like that" and then she disappears. Nancy is crying again. Finally the nurse returns with an ice pack and another nurse. "Damn that hurt!" Finally I was able to go home. Later that day my doctor calls me at home to tell me I didn't have phenomenon but a reaction to the Prednisone.So the journey continues.

THERE'S NO ONE LIKE A SISTER

A SISTER IS PART OF YOUR LIFE THAT YOU CAN NEVER SEPARATE FROM.

WHETHER SHE IS OLDER OR YOUNGER,

THROUGH ALL YOUR FORMATIVE YEARS,

SHE SHARED YOUR PAIN AND SORROW,

YOUR HAPPINESS AND JOY -

EVEN WHEN YOU WERE NOT AWARE THAT SHE WAS THERE.

A SISTER PROTECTS YOU FROM ALL HARM

AND IS ALWAYS THERE WHEN YOU NEED HER.

SHE'S A FRIEND WHO LISTENS FOREVER WHEN OTHERS TURN AWAY.

SHE HAS THE BROADEST SHOULDERS FOR YOU TO LEAN ON,

AND NEVER COMPLAINS THAT YOU CAUSE TO MUCH TROUBLE.

SHE ASKS FOR LITTLE IN RETURN- JUST A PORTION OF YOUR TIME,

A FEW PRECIOUS MOMENTS

TO EXCHANGE SECRETS AS ONLY SISTERS CAN DO.

SHE BRINGS SUNSHINE WHERE THERE ARE CLOUDS;

SHE IS LIKE A BREATH OF SPRING

THROUGH THE STORMS OF WINTER,

A GUIDING STAR IN THE DARKNESS OF NIGHT.

SHE SMILES AT YOU WHEN OTHERS FROWN

AND WELCOMES YOU WITH OPEN ARMS.

SHE ACCEPTS YOU FOR WHO YOU ARE

AND DOESN'T EXPECT YOU TO BE ANYONE ELSE.

SHE THINKS YOU ARE THE BEST,

AND MAKES YOU FEEL SO IMPORTANT

THAT YOU START TO BELIEVE IT YOURSELF.

THERE IS NO ONE LIKE A SISTER......

AND THERE'S NO SISTER LIKE YOU!

--------GERI DANKS

Taken from A Sister Is Forever 

Dear Gordon,
I can't stop crying, other times I am emotionless. My buddy Paige asks me what's going on? I couldn't tell her I was thinking about throwing in the towel, so to speak. I feel selfish because she has been a big support in my journey. I don't want to let anyone down by quitting the challenge the lies at my feet, of going on without you. I feel guilty wanting attention, I feel like no one is listening or maybe I'm just not talking. It seems like people think I'm okay, but I'm not. I'm still teetering on the edge. I want to check in somewhere to get some help, but my fear that they might keep me there overrides the need. I have read that my feelings are normal. I have no interest in anything the curtains are still drawn, not wanting the world outside seeing me fall apart. I have to push myself hard to keep my appointments with Patricia, my grief counselor. She suggested to me that maybe I needed different things from different people; that maybe one person may not be able to give me all the support and answers I need.

Dear Honey,
I would have expected myself to be non-stop crying at your funeral, on my knees asking God why he took you so soon or why he took you at all? I felt some sort of responsibility to hold my grief inside and keep it together. It just didn't seem real even when the minister said his final words. I was numb. So relieved that your pain had ended. I didn't know what to do, but go through the motions of thanking people for coming. What I do remember: I felt everyone was walking on egg shells in fear that it would finally sink in that you were gone. Two days before while making funeral arrangements, we had to go pick up your suit. I felt Beth steering me around the apartment gathering the things we came to get, not letting me get fixated on anything in the apartment. I wondered why I hadn't noticed that you had only smoked one cigarette that night, that surely I would have clued me in that there was an underlying issue. At volunteer training months before, I broke down crying. When the grief worker tried to console me I questioned her – “Why am I even thinking about a future without Gordon when he is still here?" I was mortified, thinking I should be able to control my own thoughts! She explained to me that it was normal, that it was referred to as preconceived grieving. To me it was the worst place to be. I feel now that it took me away from being there for you.

Dear Gordon,
Nov/17/97
I felt really good today, even telling a friend that something good was going to happen. That evening my friend and I attended our regular HIV support group. It turned out that one of the other positive speakers was going out of town and would not be able to do her upcoming presentation at the college. Mary, our support worker looks at me... of course I would do it! Is there any other answer? I think not! I love sharing my story because it helps me as much as it does the audience I am presenting to.

Nov 18/97
My dear Gordon,
I am feeling better I am putting weight back on - another 2 lbs,101.6. My HIV specialist will be happy, but this beeper to remind me to take my pills is getting very annoying. I have been feeling really guilty needing help from my care team for cleaning, cooking and just to remind me to take my meds. They all have their own lives to live. Mary told me, “Mouse, they wouldn't be here if they didn't want to!”

Nov/23/97
Gordon,
Rene, one of my support cluster team, asked me out for supper. During our meal I expressed to her how angry I was with your doctors, feeling that they didn't do enough! She asked if I had considered arranging an appointment with them and a mediator. I think I may have to do this in order to move on.

Nov 24/97
Dear Babe,
Paige offered to help me write a letter to your children. It was a very painstaking thing to do, not knowing what to tell them about you. Of course they had been notified when you passed but I wanted to give them the option of contacting me. Hoping they would want to know more about their dad in the future.

Dec 10/97
Dear Hon.
Now I am feeling bad about the weight I am putting on. Oh brother!108 LBS I feel fat! It is either the new HIV med Crixivan or all the sweets I eat while volunteering at Operation Christmas Child. I volunteer sometimes four shifts or more a week. I love the feeling I get sending those shoe boxes to children half a world away who barely have anything and don't even know what a Christmas present is. I feel in my heart that the time is coming to reveal who I am and what I stand for. I don't really see myself in an activist role. I have a strong feeling that whatever it might be... it will be a bold move for Church Mouse and exciting opportunities. I pray for strength and courage to pursue whatever is to come my way.CM

THINGS TURN OUT BEST FOR PEOPLE WHO MAKE THE BEST OF THE WAY THINGS TURN OUT.
------ANONYMOUS
FROM THE BOOK ON HOPE
H.JACKSON BROWN JR.

WHEN THE LOSS I FEEL IS HARD TO BEAR

IT'S HARD TO THINK OR EVEN CARE.

I TRIED TO KEEP YOU FOR MYSELF,

YOUR LOVE FOR ME A GIFT OF WEALTH.

YOU COMFORTED ME WITH YOUR TENDER WORDS AND SMILE.

THE STRUGGLES SOON BECAME WORTHWHILE.

YOU ENCOURAGED ME TO TAKE A CHANCE,

AND STOOD PROUD AS I TOOK A STANCE.

WE BELIEVED IN EACH OTHER WITHOUT RESERVATION.

HEAD OVER HEELS AND NO HESITATION.

WE KNEW OUR HEARTS WERE TO BE ONE,

IN FRONT OF A CROWD AND A SETTING SUN.

THE PAIN IT CAME TO STEAL YOU AWAY,

IT CAUGHT ME BY SURPRISE IN A WAY.

YOU WERE TIRED AND WANTED TO REST,

I ONLY HOPE I DID MY BEST.

GOD TOOK YOU WHEN I FINALLY LET GO,

THE PAIN YOU HID, NO MAN SHOULD KNOW.

MAY YOU REST IN PEACE MY BELOVED SOULMATE,

AND I WILL MEET YOU AT HEAVENS GATE.

LOVE, CHURCH MOUSE

It is Nov 13/97 and it is one year since my husband/best friend Gordon lost his fight with AIDS. I would like to share with you who he was.

Outgoing and friendly like the rest of the men in his family, Gordon seemed to be able to put anyone at ease. He seemed to know a little about a lot of different topics. His infectious smile always made me feel like #1.

His interests included nature shows, documentaries, and biographies. He was fascinated by shipwrecks and famous mob bosses. Gordon loved to play pool with his dad who he considered to be a much better player. As Gordon’s game improved so did his relationship with his father for whom he had great admiration and respect. Occasionally, Gordon participated in a cribbage league as his grandfather’s partner. I loved Gordon’s enthusiasm for both activities. Many times he could not wait to share with me how many games he and his dad won as partners, or how well he played cribbage.

Today Gordon’s pool cue stands in the corner of my closet. I am afraid to part with it almost as if it would make the hole in my heart bigger. Maybe… someday.

Gordon told me that when he was in school the kids use to call him Herc (Hercules) because of his broad shoulders and tough persona. Seeing family photos of the 70`s and 80`s he laughed when he told me, “it was supposedly cool to dress like Don Johnson from Miami Vice.” A tee-shirt with a blazer over top soon became his style back then. So you can imagine how devastated he would be in 1996 when he only weighed about 90 lbs, and knowing that his opponent in the fight of his life was not human or even visible. This tormenter was pounding his body without remorse.

Thinking back to our first date… Gordon called inquiring if he could escort me to my graduation from the interior design course I had just finished. (Apparently I had mentioned it when we met a couple days before at the Halloween party.) Graduation was followed by a dance. As we talked and got to know each other I asked if he had any children. When he shared with me that at the age of 31 he had 5 I wondered what the heck am I getting myself into! Angela from his first marriage came to our wedding. Trina, Jenifer, Gordon and Chrystal (Gordon’s step daughter ) all from his second marriage. Gordon could never forgive himself for leaving his children. As he told me "it was for the best, it wasn't fair having parents that fought all the time".

Gordon’s addiction to alcohol took him further and further away from his children. He returned home with much self abnegation and not quite knowing where he fit in. Having to move back in with his parents was difficult. When I met Gordon he wasn't sure whether he was coming or going. He was torn not being with his children but he needed to get his life together first. He loved both his families here and there. As the months turned to years, bits and pieces of Gordon’s personality shone through as he began to trust the one who couldn't help but fall in love with him. CM

 

Dragging my feet, Mary (my support worker) and I approach the little office in the middle of the cemetery. Too much time has passed. I am shaking and numb. It is my first visit to Gordon's grave, armed with only her support for what I needed to do.So far there is only a number on the ground marking his resting place.Gordon's sister Lisa and her husband (Rick) had chosen a spot under a little tree as close to Gordon's grandparents as possible. A compassionate gentleman shows us the way. Carrying my bouquet of flowers, with trembling hands I place them under the tree. Mary is thrilled about the little tree that watches over him. It was what he had wanted. I was left alone for a bit to try and take it all in.

Back home I quietly shut the door and the world outside, leaning my back against the wall, my legs are rubber. I find myself sliding to the floor, sobbing hysterically. Sitting with my back to the wall with my knees drawn up to my chest, head down. Suddenly something catches my attention... a lot of racket is coming from the hall closet. I hadn't noticed the door was ajar. Eventually Simon, our black Burmese, emerges dragging a bag of dried navy beans, throwing it at my feet... I couldn't help but laugh.When I put them away he kept trying to get back into the closet. Again he is in to mischief - he took off with the plug for the bathtub! I guess he was trying to tell me "I need you too!"

The day for the biopsy of my mouth arrives. Things go pretty smoothly until my sis Beth picks me up after the surgery. I feel okay so I get her to drop me off downtown so I can get my prescription filled.While waiting I decide to go next door for a sandwich and a drink. As I am trying to decide what I want, the lady on the other side of the counter inquires as to whether I am okay. She tells me to sit down; suddenly things are going black and I have tunnel vision. I remember her handing me a paper towel with some ice and telling me to put it on the back of my neck. The owner calls Beth to come get me. I learned an important lesson that day - that I just can't expect to bounce back after surgery, no matter how minor.

While talking to my doctor about my weight loss, weakness, hopelessness and frustration, I ask "shouldn't I be in the hospital?" She informs me "if we go that route you will have a feeding tube." I quickly opt to keep drinking the Ensure and see a nutritionist. The struggle to get back to an acceptable weight continues. As Beth is visiting I tell her about the little tree that is over looking Gordon's grave. I start to share with her through my tears my most pressing thoughts. I say "maybe if I hadn't told God that I couldn't handle anymore, maybe he wouldn't have taken Gordon from me so soon." Beth says "Mouse I don't think it was only your prayers that were being heard, Gordon had said he was too tired to fight. So don't be blaming yourself." Thanks Beth for always knowing the right thing to say! CM

 

It is still summer and I am off to attend the Canadian AIDS Society Conference in Hull, Quebec. I almost miss my plane... I get lost trying to find the home of a PHA that I am supposed to pick up. By the time I get to his place, a note on the door informs me that his partner had decided to drive him so he wouldn't miss the plane. Despite the pouring rain and a really rude mechanic I had asked directions from, I am on my way. Angry, frustrated and panicking. My mind is whirling along faster then the darn traffic! Finally getting through customs I am still racing when I hear someone calling my name. It was my passenger, Murray, and his partner, sitting in the bar very relaxed. "What are you doing here - I know I missed the plane!" I said.

"Sit down, relax, Church Mouse, the plane has been delayed." Geez! My God, this would have been a great time to have a cell phone!

Arriving in Hull, I start experiencing numbness in my legs. It is scary and something new. New meds, I guess. Murray introduces me to an another PHA from Saskatoon, Ben. During the evening there is a social meet and great.After a couple drinks I start to open up to this stranger about how hard my life has become. I tell him, "I don't think I could live through what Gordon did." Ben says, "but you did, Church Mouse, you were there!"

The next day, Murray, Ben and I decide to go to the straw market. It is summer so I put on a simple pair of slip-on white shoes that I had worn at my wedding. Unfortunately since I have lost weight, my shoes will not stay on. Returning to my room for another pair while the guys wait on the sidewalk, I am fighting back the tears. This is the second indication that I am still losing weight. First it was my rings that I needed to take in to be made smaller. I wore them on a chain around my neck for fear of losing them. After joining the guys again we make our way towards our destination. Something up in the sky catches my attention and I step off of the curb only to find myself jerked back by Ben as a car whizzes by us. In my mind I know it is Gordon looking out for me.

Back home I open my mail - a letter from Revenue Canada. The letter was addressed to the late XXXX XXXXXX.Oh my God they think I am dead! I jokingly tell my G.P. "maybe you should send them an EKG just to let them know I'm still kicking!" Examining the letter further I realize they have my social insurance number and Gordon's mixed up. The Prednisone the doctor gave me for my ulcer gives me nightmares and makes me paranoid. Hopefully this will pass.

"HOPE ABANDONS ONLY THOSE WHO TURN HER AWAY." Jackson Brown J. LITTLE BOOK OF HOPE CM

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