MY AIDS JOURNAL

JULY 2,1998

These past few days have been "necessary days" for me. I have discovered that people are not always who they claim to be. I have also discovered others who are coming from a good place, and I feel as though my life is once again finding balance. I had a good session with Anne Marie today, and processed much of it during the time she and I spent together. If anyone knows me, it is she.

As I took up my Drum today, a song came to me. It is a song about truths and about life in general, about this path we know as the Red Road. It is a strong song....a healing song....one to be sung only in Ceremonies.

It looks like my trip out to Oregon is on hold for now. I am feeling sad and disappointed and angry that it is not happening now. I also know I must trust the process and that I WILL be there when I am supposed to be. Still, my heart is heavy today...not so much because I cannot go this week as planned, but because of the circumstances surrounding this.

I will go later, when I have a vehicle, and will do the Trail of Tears and visit friends old and new along the way.

I have a whole new family there. They aren't going anywhere.

I have plans to go to the Island on Saturday with a friend. Darby and Nvwati are best of friends and love to play for hours along the beach and in the water. We'll pack a picnic lunch and lay in the sun laughing, sharing stories, and getting soaked by Darby and Nvwati. ( I wonder why they always choose ME to shake their wet fur on!!! LOL )

Tomorrow, Nvwati and I are going to take a skoot down to my favourite bead supply store to buy more beading supplies. I also need to buy a new off line journal. Something tells me I am about to enter a whole new cycle in my life and it must be documented.





JULY 6, 1998

It's been four days since I last wrote in this journal. Nvwati and I did go and buy some more beading supplies. He loves to go to that particular store, as the owners just love him and he gets all kinds of attention from strangers along the way. It is so cool watching how he interacts with people, and even more interesting to see the looks on their faces when they ask what kind of a dog he is and I tell them.

It rained all day Saturday, so the trip to the Island was out. My server was also down most of the day due to cable problems. It gave me plenty of time to begin some beading projects. Nvwati and I went to the Island yesterday for a few hours. Darby was not there, but Nvwati charmed the heck out of the lifeguards, and we had lots of fun. I brought "Bury My Heart At Wounded Knee", to read again but didn't get much read, because Nvwati wanted to play!

My test results should be in today so I will be calling my doctor later to see if this new cocktail is doing anything good for me. I have become so used to the side effects that they hardly bother me anymore. I try not to scratch the itchy rash and my intestinal crap seems to be mellowing off a bit. While on the rez last weekend, an Elder gave me some Medicine which helps the rash a lot.

So many people have been writing and telling me that they hope this cocktail works for me...I hope I have some good news for you in my next journal entry.





JULY 7, 1998

I got the results of the first monitoring since beginning of this new cocktail. My Viral Load has dropped almost 35,000 and my CD4 (T-4 Cell) Count percentage is 12.9%. This is progress. These new meds might work!! *S

I woke up today with a headache which has now turned into a migraine, so I think I will turn the puter off for the rest of the day, and stay in bed.



JULY 8, 1998

It is another rainy day. This morning as Nvwati and I strolled through the park, a wave of nostalgia swept over me, for I played in this very park as a young child. Then, it seemed so large! Today, as the rain drizzled down on us, I found myself looking - yes - looking around me for the first time in a long time. I became aware at a deep gut level, of how life has changed. As I passed the homeless sleeping in flimsy sleeping bags, under the majestic maple trees, I wondered what battles life had shown them. I made a promise to myself to get involved with Anishnawbe Health's "Street Patrol" again, as soon as my health allows it.

Street Patrol provides hot coffee and soup, sandwiches, warm blankets and sleeping bags. Most importantly, they provide a warm smile, non-judgemental conversation, and a hug when needed, to those less fortunate than ourselves. This is a programme which Anishnawbe Health Toronto has been doing for many, many years, and only in the past few years gaining recognition for their work by our City Council. Street Patrol has been responsible for saving many lives during our cold winter months. It is also Street Patrol who often finds those who have died on the streets of this cold, cold city, for they know who the homeless are... they know their names and sometimes, where they are from. They know where these people live, be it in a local park or alleyway, under a viaduct, or in one of our subway tunnels. Each night Street Patrol is out, they do their rounds, visiting each and every homeless person they know. Some of my fondest memories are of when I was healthy enough to go out on Street Patrol as well.

I read the little plaques on the park benches and trees - little memorials to those who were murdered in this park over the years, and I wondered what happened to the safety I felt in this very park as a young child.

As I passed the atrium and looked across the street, I saw the very house I lived in as a child...that house holds many happy memories for me, for it was during a time when my parents were together and life was good. I stopped for a bit near the playground, remembering the hours I spent there as a child, swinging on the swings, playing on the teeter totter, kissing my first boyfriend. Frank Ingraham and I were 6 years old and in grade one then.*S. Today as I stood there, the playground was empty. The only other people in the park today were those who live there.

Then I looked up and saw a hawk fly overhead, and I knew they were safe. I returned home just as morning light began to break through the skies.



JULY 10, 1998



Today has been a good day. I awoke to so many wonderful greetings from my new found extended family in cyberland...First Nations people world wide who are in recovery. The love I have felt from them massages my Spirit. Miigwetch to you all, for walking this path with me. I am so so honoured to be a part of your Circle.

This is a wonderful break from the stress I have been feeling over the situations of my Sister and Brother Wolves in NC, as well as those being hunted down by others and killed.

I was very tired today, and lay down this afternoon. Nvwati slept beside me for 3 1/2 hours. He is just so precious...he could care less about what we are doing as long as we are doing it together.

Early this morning I took him to his favourite romping place where he was able to play with "McGee" and "Molly", two of his puppie friends. Later in the morning, we went for a long skoot, getting some shopping done. Then, this evening I took him to the park again where he met up with two more puppie friends who live with a wonderful African American woman and her daughter. He is exhausted again, and is sleeping at my feet. Hopefully the thunder spirits will not visit tomorrow and we can go to the Island again.

I am so happy, cuz I was able to get some updated photos put onto disk (still no scanner) and I have received offers from others to help me reduce them in size so I can add them to this site. Unfortunately, none of the photos of Nvwati show his beautiful ice-blue eyes...but believe me...they are so striking!I need to get some beading done over the next two weeks, because Anishnawbe Health is having a Penny Sale for the PHA (People With HIV/AIDS) Fund, and I offered to make some items for the sale.

I LOVE our Penny Sales, because I get to meet many different people who happen to just be in the Centre that day, or who come in to purchase tickets, hoping to win something.

I volunteered to sit there the entire day. We are also planning a spaghetti dinner in the near future for the PHA Fund.

First Nations AIDS Organizations are amongst the least funded in this country. Anishnawbe Health lost all funding for PHA's this year, barely hanging onto the funding to maintain the position of our AIDS Prevention Worker. Cass is a wonderful friend of mine. He is a strong Traditional Lakhota man from Pine Ridge. Regardless of what he is doing, if Nvwati and I stop by his office, he always has time to sit and chat with us. Now, whenever we walk in the building, Nvwati runs directly to his office!

Well, it's late and I am tired so I think I will turn this puter off and light my Smudge Pot.



JULY 13, 1998

These past few days have been good days for me. I am feeling much more energized than I have in months! I do believe these medicines are working!!

Today is "clean the home day"...the sun is shining as well, so I will be taking Nvwati out for a long skoot today. This morning we dubbed some music and taped a few songs for some friends of ours. What a wonderful way to begin the day! *S

I'm overwhelmed with loving messages I have been receiving daily from the FN Sobriety list. It seems that overnight, my family...my Circle of Friends has grown.



JULY 17, 1998

A few weeks ago while Nvwati and I were at the park I noticed a young man sleeping on a park bench. His sleeping bag had fallen off his shoulders, and since it was a cold morning, I gently reached over and covered up his back. He woke up for a second, looked at me and said, "hey, thanks!" Since then, we have briefly chatted when we see each other in the park.

Yesterday I found him sleeping in the driveway of my apartment building. I left him a note, telling him I live in this building and invited him in for breakfast when he woke up. He didn't show up yesterday.

This morning he was there again, so I came upstairs and made him some breakfast and brought it down to him. I left it under his backpack next to his head with a note attached to the backpack telling him again what apt. I live in and offering my friendship.

There's just something about this young man! He is around 21, he's a FN man, and I suspect, not used to being homeless. He is in my thoughts and prayers throughout the days.



JULY 22, 1998

My friend in the driveway continues to sleep out there. Each morning I bring him some breakfast and leave it for him by his backpack. Still don't know anything about him. I did tell Street Patrol that he is there, though, so they will check on him during the nights.

I went into a Sweat Lodge at Walpole Island on Sunday. It was a "hard" Sweat...much work got done in there. I asked some questions about my father's death, and was given the answers. It was very emotional for me, and I am now processing the grief. When I came out of the Lodge, I collapsed on the ground, my face to Mother Earth, and just sobbed. Someone brought me water to drink. Then we went and hopped in the pool, nightgowns and all! There were three little boys in the pool and their innocence of youth, soon cheered me up.

I met with Anne Marie yesterday and began the healing work around my father's death. Something tells me it will be awhile before I am done this piece...if I ever get done it. How can I til justice is done?

I've GOT to get some beadwork done today for the penny sale at Anishnawbe Health tomorrow. I promised to sit at the table and sell tickets all day..something I love doing cuz I get to talk with so many people in my community who happen to be in the Clinic that day. I will also be seeing my Medicine Man again on Thursday. He and his partner have just become Grandparents again for the second time in 6 months. This new baby, another girl, is absolutely adorable!

Nvwati, of course, was SO angry with me for daring to leave for the day without him.



JULY 24, 1998

MIIGWETCH WENDAAM MANITOU!!!

I saw my doctor again today, and my Viral Load continues to drop dramatically! It looks like this new cocktail is working for me!

I am at a loss for words. I would like to thank all of you who have been praying for me, whether that be in a church, a temple, on a mountain top, or in a Lodge.

I was warned by my doctor that this rapid decrease may begin to lessen, but will hopefully, balance out. He warned me not to be upset if next month it doesn't show as much decrease, but for now, I just want to rejoice in this news. (smiling)

Yesterday I visited with my Medicine Man and smiled when he told me what I should be taking along with western medicines, because it is a root that I take regularly, anyways. My doctor seems to think this could be part of the reason the cocktail appears to be working for me this time.

Nvwati and I are very excited, because someone very special to us is coming to visit us early tomorrow morning. Nvwati, however, is NOT happy that he must have a bath today. I threatened him that if he didn't hop into the tub, I would have to bring him to the groomers. As I type this, he is, again, hiding under the table, hoping I can't see him. HAHAHA. Is he in for a big surprise!



JULY 27, 1998

I couldn't sleep all Friday night, aware that my friend was driving through the night..concerned about her getting here safely. Saturday was filled as she put it, with laughter, with tears, with words, with silences, with comfort, with strain...everything we expected it to be.

Following a 24 hour visit, she left for the return trip home...another 12 hour drive. I crashed after she left..totally exhausted, and was happy to wake up around midnight to see she had arrived home safely. Thunderbirds travelled with her, playing tricks on her.

She left behind a tee shirt which Nvwati snuggled up into all day yesterday. It was such a precious sight! She took tons of photos so I will try to get some on disk and into the online photo album I've been wanting to do for so long now.

I'm going through major changes in my life these days..good changes....hard changes...healthy changes.

And I am so very greatful. Miigwetch Wendaam Manitou!

My friend in my driveway seems to have moved on. He is in my prayers and my thoughts daily.



JULY 30, 1998

Yesterday I had a visit from a woman on the FN list. We shopped for food for our PHA Circle, then we went over to Anishnawbe Health and I made some homemade vegetable soup, sandwiches, strawberry custard, and cut up some cheese and crackers. Our Circle was small, but it felt so good to be there. I just love Ella, the Elder, who always does our opening prayer for us. She reminds me so much of my own Grandmother. It was good to take up my Drum and sing as well. Nvwati was so angry at me for leaving him behind all afternoon.

I felt absolutely drained last night, and could barely keep my eyes opened. My sweetie phoned me long distance and kept me talking til it was time to take my bedtime meds, and then I just crashed.

This morning I realized I have a herpes outbreak on my face...this is sure indication that I have been overdoing things, having too much stress in my life, etc. Today I plan on taking it easy...sleeping a lot and just hanging out on our roof top terrace, writing snail mail, perhaps.

My friend, Laura, leaves tomorrow morning for more of her travels, photographing women with their dogs...this time along the west coast. She bought a laptop though, so I will still be able to communicate with her as she travels. She may be visiting Kris, a friend of mine in Vancouver. Kris is a filmmaker who is finishing up a documentary about me. I think the two of them will like each other.

I wanted to skoot over to Revenue Canada today to get the papers to file income tax (I've never filed before), but I am just too tired to do that today. I will try to do it tomorrow. I can back file for 7 years I have been told, and I plan on buying a vehicle and doing some travelling with Nvwati. I've met so many wonderful people over the internet and I am looking forward to meeting them all in person.



AUGUST 2, 1998

I've been feeling very tired and run down these past few days. Spent a lot of time in bed, resting. Yesterday I took Nvwati to the island with Thom and his dog, Darby. It was good to see the little four leggeds play. Nvwati is a strong swimmer. We had a wonderful picnic lunch of cous cous salad, garden salad with yummy raspberry vinegar dressing, sandwiches, cherry tomatoes from Thom's deck garden, bottled water, and scones. We had to leave after three hours because the horse flies were eating us alive.

On the ferry ride home, I bumped into a woman I hadn't seen in 23 years! She recognized me immediately and we had a 20 minute ferry ride to get caught up. She was saddened to hear I have AIDS and require a skooter to get around. She had a few laughs as I told her the story of my bilateral mastectomies. She was happy to see me so happy.

I feel as though my life is full, lately. I am in love! It is a long distance relationship and that does create some difficulties, but none that neither of us aren't willing to work out. I hate the thought of seeing our phone bills...but soon that will change.

I've been having lots of puter problems these past few days. I have no where enough memory, and need to have it upgraded. In the meantime, the majority of my time on line is spent trying to safely delete things so I can answer mail, and do updates on my web sites.

I will be going to bed early again tonight, hoping to feel better in the morning.





AUGUST 5, 1998

These past few days I have been feeling really run down. I'm having difficulty sleeping, and have little energy to do anything. I'm going through some major changes in my life, and feeling somewhat confused about some decisions I must make which will greatly affect my future. Fortunately, Anne Marie meets with me weekly, and we've been processing these changes on an on-going basis. She always tells me to trust my gut, and I know my gut is rarely wrong, but right now my gut and my head and heart are not saying the same thing. I guess more will be revealed as time goes by, as it always is. I just need to trust the process. Today is another of those days where I love with one hand and I fight with the other.

Today's agenda involves doing some baking for the penny sale at Anishnawbe Health Toronto's AIDS Prevention Programme. I look forward to spending the entire day there tomorrow, staffing the table, as it is not only a healing environment to be in for the day, but I also get to see many people from my First Nation's Community, who I rarely get to see. I'll bring Nvwati with me for awhile, until he begins to get restless.



AUGUST 13, 1998

Creator: i humbly come to you today...asking you to help me through this pain..knowing that you have a reason for everything that happens...and trusting your reasons. knowing....deep in my heart...that you don't make mistakes...and that we all make choices which affect the outcome..i believe you give us the ability to choose what we do...and you must have different outcomes for each possible choice.... just as i chose to surrender to the disease of addiction...you had an outcome..and i am so very greatful for it...and i honour it ...each day of my life...and i try to give back...i try to stay focused on the red road...for it is the one which has helped me the most... and i know that sue had strength...she too made choices...some which others did not understand...did not accept...and she hurt over this...she wanted to do what she was doing...how we argued over the past 15 years...me trying at times to change her...not wanting to see her hurt herself as she was doing...how she felt she was not hurting herself...knew what she was doing...felt safe...invincible...and how i came to accept her choices...and love her unconditionally...accept her for who she was...all of who she was... Creator, she said she was safe...only working as a prostitute long enough to provide for her aging parents...and would quit when the time was right...and this trip to the usa was supposed to be the beginning of this end for her...big money in a short time...and Creator, i knew that nothing good comes out of this lifestyle...having lived it...having survived it...having left it all behind...never looking back...never wanting big money in a short time...never even caring really, about big money at all....living simply in my humble home...and greatful for all that i have. something went wrong , Creator...i do not understand...she was not supposed to be in mexico...she was not supposed to be there, according to her plans... and in my broken heart...she was not supposed to die. but perhaps...you had other plans...and perhaps..she made bad choices regardless of the signs you so willingly gave to her...perhaps she thought she WAS invincible...and perhaps her time was up... Creator, i am not angry with you this day. i know you would never want any of us to hurt the way she did...to suffer...to die...to lay in the mountains...waiting for her body to be found..wouldn't want her family and friends....those who love her...to feel this pain...this emptiness...sue made decisions...she knew the consequences of her actions and she played with fire. Creator...she lived the life she wanted...did the things she wanted....without fear. and her end was not pleasant...but it was too late for her...too late to change her mind...and i pray now for acceptance. i know i am not alone. i have many who love me...i have my recovery...i have unconditional love in my life today...and i am okay...i have my Drum...i have my Medicines...i have my family in recovery...i have Nvwati. i have my Spirituality...i have my Elders...my life... and i offer my life to you...to do as you will...and i will honour your will...and continue to live...continue to walk this red road...continue to love with one hand and fight with the other.....knowing...that i will, someday...love with both hands and the fighting will be over... Creator, i say Miigwetch Wendaam for this lesson...for your faith in my ability to handle this...for your love...and for your healing power...and for your knowledge that i WILL be okay...and for my knowledge that sue's death is not about me...it is her trip...her journey...and her pain is left behind...she is free now...free to soar amongst the eagles...and..according to someone...probably reading the manual to her new life in the Spirit World...laughing with those we loved and who have gone before her...watching me ....knowing i am okay...knowing i WILL accept this...for this is what i must do.. Creator, miigwetch for giving me these years to know and love my friend...and for the memories...memories i will forever cherish.,.., miigwetch...miigwetch...miigwetch...miigwetch... all my relations!





Sorry I haven't been writing much lately. I've been busy trying to do other online stuff. GREAT NEWS!! NVWATI IS ONE OF THE SEMI FINALISTS IN THE ADVANTAGE NORTH AMERICAN PET SINGING COMPETETION! HE COMPETED IN TORONTO SINGING BRAVEHEART ACCOMPANIED BY MY DRUMMING. HE CAME IN SECOND. HIS NEXT STEP IS TO COMPETE IN NY ON SEPT. 16TH...AND IF HE IS ONE OF THOSE SEMIFINALISTS HE WILL GO TO LA TO CUT A RECORD!

Nvwati and I will be going to Milwaukee tomorrow to spend a month. I'm really looking forward to getting away and spending time with my partner. I plan on doing a lot of crafts while there, relaxing and simply working on my website.

My friend, Sue, was returned home from Mexico where she was murdered, and she was cremated this week. Her family decided against having any funeral or memorial service for her, so I guess I will have to do closure in some other way. Her murderer(s) have not yet been found.



September 2, 1998

Today marks the 8th year anniversary of the rape which left me living with AIDS. I had a difficult time sleeping last night, and lay awake on my couch listening to the thunderstorm for awhile, before finally going to bed. I'm going to spend most of today doing some beadwork. I have to make Nvwati a new collar for his competition in NY on the 16th.




SEPTEMBER 18, 1998

Nvwati did fantastic in New York...he sang his heart out beginning with a 4:30 AM ride to sing from 5-9Am on "Good Morning New York with Bill Evans" show..then media interviews from 9-11...then the competition at 11AM.. he did not win the title but DID win the online People's Choice Award!

He was recognized everywhere we went and he entertained people at Times Square all evening!

The contest can be seen at http://www/cnn.com/ and an update on http://www.nofleas.com/
I'm pretty drained right now...it was a lot for me to do. My friend's mother went with us and she has non-stop energy, so basically we saw NY in two evenings..everythig from eating at Lindy's to a horse drawn carriage ride through Central Park at midnight.

I'm back in Milwaukee for another week...something tells it will be a week of rest.




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