AIDS Action Day 2009

AIDS Action Day 2009

Tuesday, November 22, 2016

Grief, part three - The ongoing state of my life

   Well, my mother's memorial service was this past Saturday.  I was surprised to find that it was more difficult for me than I thought it was going to be.  And afterword, it is still sorrowful and still extremely depressing.  Yet I have to say that throughout the process there were good moments too.
     The visitation and memorial were nice.  I was amazed at some of the people who took time out to come and pay their respects.  People who traveled from the Twin Cities, people who only knew mom through her time at the nursing home and didn't know the family, old friends of mine who were a big part of my young life and childhood in Rochester, family that had traveled far, etc.  It seemed to me that the best of people's personality showed at the time of my grief and mourning.  The memorial service was simple, each of the surviving children read a poem and my childhood friend, Reverend C. Nelson, gave a very nice talk about mom's life, her influence on others and the influences that shaped who she was.  I didn't feel terribly sad until the graveside service when I was forced to say my final goodbye.  There I shed a few tears and let go of my mother's physical being.
     It was after we returned home that the grief poured in and took over.  I received a notice that a wonderful friend from my childhood had made a donation to the Alzheimer's Association in my mother's name.  Suddenly I was overwhelmed with sadness.  I was surprised by the loving generosity shown and deeply saddened that I could not share this moment with my mother.  It was also then that I realized that the person who had always meant so much in my life was no longer there.  And even though the past few years had been difficult, at least I could always sit with her and hold her hand.  Now my mother's hand was gone. 
     And now a few days after the service, I am even more saddened by events that have angered, hurt and depressed me even more than ever before.  I feel as if those who should have understood what I was going through and how I was feeling did not understand or at least chose to ignore it.  I will not go into details here other than to say that now more then ever I wonder if all this is worth it.  I know that mother is at peace, I sometimes wish that I could be too.  I know that I will not do anything "drastic" but I also will not quickly get over the hurt.  Eventually, the pain will go away and maybe the depression will too.  My mother would not want me to hold the anger and I will not let the anger, pain and depression win.
     So now I am left with memories.  Memories that will keep my mother alive in my heart and will cheer me when I am sad and depressed.  Memories of my childhood, of happy times, of long talks, of gathering with family around the table for a wonderful home cooked meal, of holding my mother's hand.  And I will remember the memorial service, the wonderful friends and family that showed their love and support as I went through this painful period of grief.  And soon, I hope, the grief will be replaced with a calm knowledge that I did all I could for my mother and my reward was, and always will be, memories of my dear, sweet mother.
     So long mom.  Until I see your smile, your bright blue eyes and hold your hand, please know that I am okay.  Oh, and tell dad and the rest of the family with you that I miss them.

 
Oh, and one more thing, if you are so inclined, we would like to see donations made in the name of Ida E. Bandel go to the Alzheimer's Association.  
Please go to - alz.org to make your donation.
Thank You!

Saturday, November 12, 2016

Grief, part two

     My dear mother passed from this life to the next on Friday, November 11, 2016 at around 9:00 am.  I arrived to see her at about 9:05 and was the one who found that she had gone.  The nurse had been in to give mom medication about 10 minutes before I arrived and mom was comfortable and breathing calmly and without stress.  Then, between the nurse visit and my arrival, she decided it was time to go,
     Since my mother's death I have been struggling with exactly how I feel.  I seem to be split into many parts, my version of grief.  One part of me is relieved that she is no longer suffering.  Dementia had robbed her of so much.  One part of me is happy that I was able to spend time with her the last few days before she left us.  I was able to hold her hand one last time.  A part of me feels so excited that mom has finally been reunited with the love of her life, my father.  Mom died just two days after what would have been my parents' 77th anniversary.  Then there is the part of me that feels extremely sad.  I have lost my mother.  I will no longer see her bright blue eyes and her warm smile.  I will not be able to sit quietly and hold her hand as we watch the world pass by.  I guess the sadness is gradually becoming the strongest of my feelings.
     My mother and I always shared a special relationship.  We always were happy when we were together.  We could talk for hours, often we did talk until late into the night.  We shared a love of art, music,, nature, animals, laughter and so much more.  Mom enjoyed teaching me things, for instance crocheting.  I remember once wanting a homemade afghan.  Instead of making one for me, she decided to teach me to crochet so that I could make my own.  I worked for abut a year and the result was not the greatest but not only did I have my afghan, I had the pride of making it myself.   I still have the afghan and it is a reminder of lessons taught by my mom.  Mom taught me to be proud of myself not only in her pride of me but in helping me to have the tools to be proud of what I could accomplish.  And I was proud of her and proud to be her son.  I won't say that we didn't have our disagreements, we certainly did, but they never strained our relationship.
    Today memorial plans were finalized, flowers were ordered and the headstone engraving was ordered and paid for.  Things went smoothly with my sister, brother and I seeming to know exactly what needed to be done and how to effortlessly accomplish the "to do: list.  Still, at times I felt as though I was on autopilot, not really there, not really saying the words that were coming out of my mouth.  I was glad that those we worked with were patient as I struggled to find the words that were close but seemed to be so hard to reach.  My nerves seemed to be on edge and I struggled (at times not very well) to restrain my temper.  I also had issues with exhaustion.  All, I think, were a result of my suppressed grief.    
    Now I grieve for all that has gone, for all that will no longer be.  I have not yet shed many tears but I know that they will come.  I will truly miss my mother as I do my father and all the other loved ones that have gone before.  And I grieve for the part of me that has been taken with the life of my mother.  A bit of sunshine is covered by the small cloud that is the death of my mom.
     Many words of comfort, love and support have already been flooding in.  I don't remember ever feeling that there were so many people who cared.  Even with my own illness and near death, the love and support came only from a few.  I can honestly say that the love and support I feel now is so very helpful and necessary for me to go on with my life in spite of my grief.  With love and support I know that I will make it through this fog, this cloudy day, and eventually the grief will be replaced with happy memories and pride in my parents, my family and my friends.  For now however, I will  grieve.



I Love You Mom
And I Always Will


Ida Elizabeth Bandel
Born August 28, 1918
Died November 11, 2016
Lived over 98 FABULOUS Years
  
     

Thursday, November 10, 2016

Waves on the beach......... The watch goes on.....

    I am now alone with mom.  At the moment the only sound is from the oxygen machine that pumps in a steady rhythm, the sound reminding me of gentle waves coming onto a sandy beach.  I am  sitting next to mom's bed, holding her hand and watching her breath.  Her breathing is shallow and at times erratic but it goes on.
     As I sit here I can't help but think of the many times that mom sat with one of her children nursing her child back to health.   With five children, there were lots of colds, flues,  strep throats and other illnesses that gave mom concern.  I remember the many times she would sit with me, reading a book or singing to me until I drifted off to sleep.  Her loving care would get me through the night,  gently and sweetly making me feel as if I was her only priority, her only worry in the world.
     I also am reminded of the day I first saw mom after two major hospital stays and twice coming close to death,  I sat with mom at my sister's house and explained that the reason I had been so sick.  I had AIDS.  I had been worried about telling her because I had no idea how she would react.  Besides,  she was in her eighties and I wasn't sure if she even knew about HIV or AIDS.   I had no reason to worry.  Mom and I sat together on Joy's couch, just the two of us,  as I tearfully said the words,  "Mom, I have AIDS. "  Her reaction was swift and totally unexpected.   She put her arm around me,  held me tightly and said, "That's okay,  as long as you get better."  I asked if she understood what having AIDS meant.   She nodded and said that she understood a little about HIV/AIDS and what she didn't know,  she would learn.  Tears streamed down my face as mom silently held me in her loving arms.   And true to her word, when she got back home to Rochester, she immediately called and signed up for the Red Cross HIV Instructor course.  She ended up being the oldest in the state to take the course at that time.  That was the kind of mother she was,  always ready to do what was needed to help and support her children.    
     Now things have changed, the tables have turned and I am the caretaker.  I am now the one sitting by mom's bed.  So here I sit, holding her hand and talking about all the fun we used to have and all our shared memories.
     And I watch her breath.
                               And I listen to the oxygen machine.
                                                       And I remember..........


Grief....

     We each have had to face grief at different times in our lives and for different reasons.  We grieve for the loss of a loved one.  We grieve when our candidate loses the election.  We grieve when our favorite sports team doesn't win the big game.  We grieve at the change of seasons.  We even grieve for our lost youth and the memories of our childhood.  The list goes on...
     Today I face the grief of the loss of a parent.  I sit and watch and wait.  Mom still clings to what life she has left.  I watch and wait as I have a done for years as mom has been very slowly robbed of her memories, her independence, her speech and now her life.
     My grief is partly because, in mom's typical style, life is leaving her slowly.  I grieve for the happy times that from this time on, will only be memories.  I grieve for the wonderful (and LONG) talks that mom and I had.  I grieve for the vacations we used to take, mom and dad showed me the country and expanded my views of the world.  There are so many reasons that this process, although expected and a necessary part of life, causes me to grieve.
      Yet, my life will go on.  Tears will be shed.  My grief will be shared with others who love mom.  I will laugh at the fun we had.  I will continue to remember, to tell the stories of the happy times with my parents.  I will make sure that my mom will not be forgotten.  I will live with the values that my mom and dad passed onto me.  I will grieve but I will remember and slowly the grief will pass.  But most of all, I live the rest of my life with my parents watching over my shoulder, being proud of where I came from and who raised me to be the man I now am.  (for better or worse)  And I WILL make my parents proud!    

From Bad to Worse

     You know the old saying, "It can't get any worse"?  Well let me tell you that actually, it can.  Much worse.
     Last night I was trying not to watch the election return news because when I checked, I was shocked at the very depressing news.  Then, when I was about to go to bed and cry myself to sleep the phone rang.  It was about 2:00 AM and I almost didn't.  However, I decided to look at the caller ID.  The call was from Maple Manor Nursing Home.  My heart sank as I picked up the phone.  Bad...
     The person on the phone was the nurse taking care of my mother.  He was calling to let me know that mom's condition has suddenly deteriorated.  Her extremities were mottled and she was now unable to get out of bed and not able to eat or drink.  We decided to place mom in palliative care.  So now I was forced to face the passing of my mother.    Worse...
     I drove down to Rochester around noon after canceling appointments and arranging motel reservations.  Since getting here I have been sitting at mom's bedside talking, holding her hand and remembering all the wonderful times we had.    My sister Joy is with us, my brother Ken was here and mom had visitors from family friends.  Memories are flowing, no tears yet...  Worse.....
      As far as I am concerned, there is nothing worse than watching someone you love drift slowly towards the end.  Mom has had dementia that has slowly robbed her of life.  As we watch the light in her eyes dim and go out, the pain is immense.  We know that she will no longer be in pain and she will be with dad but still letting go is so hard.  I wish that for one short time, even just a few minutes, I could have a conversation with mom.  A conversation like we used to have.  Talking about our lives, sharing memories and laughing.  Just a few minutes.....   Worse.......
  So, we watch, we wait and we hope all will be well in the end.   Better?


Saturday, November 5, 2016

Top Floor, Sunshine and Clear View - Going DOWN


     I have been doing a lot of thinking about my life, my world and especially my mood lately.  I have tried to explain how I am feeling but have had trouble putting it into words.  Then, during one of my MANY sleepless nights, it came to me, my life is very much like an elevator in a skyscraper, constantly moving up and down, never staying on the same floor and being influenced by people, circumstances and actions that push the buttons causing the elevator to move. 
     Picture this: you are a skyscraper in a large city.  You may be surrounded by other skyscrapers or you may stand alone. Inside your skyscraper is an elevator that is your mood.  The higher the elevator goes, the better your mood.  The lower it goes, the worse your mood.  Your elevator goes up and down as people, circumstances in the city around you, and the resulting actions push the buttons that may take your elevator to the top (scenic observation floor) or the bottom (subbasement levels) or to any floor in between.
      My skyscraper has just a few other skyscrapers around it, offering love and support.  Lately the elevator in my skyscraper is at the lower levels and having issues moving up.  In fact, my elevator has gone lower that I ever thought was possible.  The stress of my health, my AIDS diagnosis, the current state of the "city" my skyscraper is in (the USA) and some of the truly frightening people in my city as well as the awful election that has taken over my city (and has gone on FOREVER) all are pushing the elevator buttons to go down.  So far my elevator has reached the lowest point yet, the sub, sub, sub, etc., basement.  The place of darkness where monsters live. Where the darkness is overwhelming and the oxygen is sucked out to fill the top floors.  In other words, I have been severely depressed.  In fact, I reached a level in my skyscraper that was so low, I had not thought it existed.  I dealt with constant pain, I was horribly sad, I questioned if my life was worth continuing the fight, I questioned my own worth and I actually thought about what would be the easiest and most painless way to end everything and take down my skyscraper.  I also wondered if anyone in my city would care if my skyscraper was gone.
     Through talking with my psychologist, and working with my psychiatrist to better deal with the low elevator by changing and increasing medications my elevator went up.  Through hearing from Jim, my wonderful and supportive husband, and a very few family members who care, my elevator has continued to go slowly up.  It will be a long and slow process to once again approach the observation floor but I have nothing but time.  The pain will linger but I am healed from my last surgery, so that helps.  I am continuing to see the acupuncturist and we are working on specific places in my skyscraper that are in pain, slowly working to "fix" the structure of the building and therefore slowly decrease the pain.  I am trying to get myself to once again interact with the skyscrapers around me.
     So, I am no longer in the basement, my elevator is on the first floor of my skyscraper and the doors are open to take on new passengers and perhaps go up.  My skyscraper is still standing and I hope it will continue to.  I am beginning to once again appreciate my life, also those skyscrapers who stand around me not to mention all those who might move into my "neighborhood" and "family".  Stay tuned and maybe the next post will be about the view from closer to the top! 


Wednesday, June 15, 2016

Fear and fear itself

     Since the shooting in Orlando this past weekend I have been thinking a lot about fear in my life and fear that others like me might have.  It is with a heavy heart that I feel the need to explain myself, to explain a life of fear and the hope that kept me living.
     As a boy I remember always feeling afraid most of the time.  I was afraid of being different.  I didn't like sports, I liked music.  I didn't play football, I played the violin and piano.  I didn't play baseball, I played kickball.  I didn't want to have a girlfriend, I wanted a boyfriend.  I was not like the other boys and they knew it.  I was bullied, I was threatened and feared for my safety.  Even in a "nice place" like Rochester, MN in the 1960's and 1970's, I was in fear.  I could not be myself.  Sometimes the fear was enough to fake being sick so I wouldn't have to go to school.  Most of the time the fear just caused me to go into my shell and become the introvert I was and still am today.  And even though I had a very loving family and a few good friends, I feared what would happen if they found out who I really was.  I feared that they too would hate me because I was different.  In spite of this constant fear, I was hopeful that some day I could be who I was, open and honest about being gay in a world where that was not the "norm".
     When I moved to Minneapolis with Jim in 1986, some of the fear I had growing up began to fade.  Suddenly I was in a city where there were others like me.  I had the love of a really good man and with Jim, I was part of a larger picture, the gay or GLBTQ community.  Still I feared being totally who I was in public.  Even though we were in love, we were not allowed to show that love as we walked down the street or sat in city parks.  We could not hold hands or kiss where someone might see us.  I feared that we could only be who we were in the privacy of our own home.  Still, I was hopeful that things could change, that some day we could be open and publically show our love.
     Then in 2002, I was diagnosed with AIDS and my world changed dramatically.  Suddenly I had to be open about who I was to strangers, to doctors and nurses, to the Department of Health.  I had to be open and honest to my family, friends and coworkers.  Suddenly my fear took on a whole new perspective and not only was I in fear of being who I was but I had to fear that people in my own community would think less of me because of my diagnosis.  I feared losing friends and the love of family because of the shame of having AIDS.  I also had to fear for my life because of my health.  As I came to terms with my new fears, I realized that being open and honest, being who I was and telling people about my diagnosis was helpful in lessening the fear.  After a short time, thanks to a good friend and teacher at a local high school, I began telling my story to complete strangers and high school students.  I was suddenly telling people about being gay and having AIDS.  Yet, there were fears of stigma and shame and fears of being too public.  But I held out hope that some day I could be myself and not have any fear.
     In 2006, after 20 years together, Jim and I were legally married in Vancouver, BC, Canada.  As we spent the week in Vancouver, my fear was gone as suddenly we were in a place where who we loved didn't really matter.  From the moment we crossed the border, we were first class citizens.  We could be ourselves and I had no fear.  It was wonderful!  Then we came home.  As we reached security in our own country, we were back to being second class citizens.  We were forced to go through security separately, as not legally married, not as a family.  The fear returned.  But again, I held out hope that one day our country would recognize our marriage and we could be ourselves without fear.
   Then suddenly it happened.  Marriage equality happened in Minnesota!  We were finally first class in our home state.  The feeling of joy quickly replaced the fear. And then marriage equality was the rule in all of the US.  We went to GLBTQ Pride that year with a renewed sense of who we were and we actually felt no fear walking together and holding hands.  We had finally made it to the place where we were all equal, or so I thought.  But there was always an underlying bit of fear and we continued to not show affection in public places.  Still, we had moved toward the right direction and hope was closer than ever.
     When the current Presidential election began there was a huge outpouring of hate and bigotry in our country.  Suddenly all the fears I had lost returned.  I feared that the wrong people would find out who we were or find out about my AIDS diagnosis.  I no longer felt safe in my neighborhood, my city, my state and country as I was afraid that the hatred and bigotry had spread.  I began to fear that if a certain Presidential candidate won, Jim and I would again be reduced to second class citizens and the hate and bigotry would spread enough that we would be forced once again to hide who we were.  I feared that I might not be safe outside my home.  Yet, I continue to hold out hope that the best candidate will win the election this coming November and my fears can be put to rest, at least until the next election.
     But this past Sunday morning my fears came rushing back.  As I watched the horror on the news and saw my GLBTQ community attacked and hurting, a lifetime of fear flooded over me.  I feared for those who were at the nightclub and their families and friends, I feared for our friends who live in Florida and I feared for our community and for our country.  Was this the beginning of more violence against the GLBTQ community, against our country?  Who would be next and when?  Would we be safe or would we have to fear leaving our home and would we have to fear attending Pride this year?  My hope once again began to fade. 
     And it was then I realized, fear was what the haters, the bigots, the shooters, the "terrorists" want me to feel.  Fear is what they expect.  The more I thought, the more I realized that I would not go back to being afraid, I would stand with the man I loved and show courage when courage was most needed.  We would attend our GLBTQ Pride with courage and strength and we would not let fear rule.  We would show who we were and who we loved without fear.  And maybe, just maybe, we would even hold hands or kiss in public. 
     Hope MUST replace fear.  Hope MUST win if the world is to become the world I dreamed of as a child.  Hope of a world where we can all be ourselves, love who we want and show that love without fear, without being forced to be afraid.  Hope of a world where little boys and little girls can be different and that is okay.  I still have hope.....