My Four Letter Word...

P - A - I - N

   Of all the four letter words I know and occasionally - okay, often - use, this is the one that hurts me the most.  (pun intended)  It is also one I either say out loud or in my head several times in the course of the day.  The reason, this is a good word that describes my life.  HIV and AIDS have made a mess of my body and one result is pain.

   I live with physical pain to some degree each and every day.  All over body pain, leg pain, muscle pain, pain from neuropathy, deep aching pain, pain in my lymph nodes, occasional stabbing pain in my extremities , headaches (both migraine and tension) and lately severe pain from yet another outbreak of shingles (# six in the past eight months).  It can hurt to sit, it can hurt to stand, to walk, to sleep, etcetera...   

   How do I make it through the day with all this pain?  Sometimes even I wonder about that.  I do have pills I can take that will numb the pain.  And I do some guided meditations that can help to relieve some pain.  I take hot showers.  I have wonderful caretakers, my husband Jim and our "nurse cat" Rudi.  And since last February, I have seen an acupuncturist that to help with the pain and other issues.  But mostly, I have learned to live with it.  You see, (and some of you may already know) I am a Taurus born in the year of the Ox.  I am determined and stubborn.  I am bull-headed and unmoving.  I will achieve my goals no matter what.  And my ultimate goal, to remain strong and carry on!

   People often have no idea how much pain I do live with, mainly because I try hard not to complain about it and also because I try hard not to look like I am in pain.  When I attempt to describe my aches and pains, I tend to minimize by saying things like, "It's not too bad" or "It's only aches a little, like when you have a cold or flu".  And I really hate to burden anyone with my troubles.  Besides, other than suggestions and perhaps sympathy, there really is nothing anyone can do to relieve my pain.

   So, I hold my head up, I stand tall and try not to complain.  I patiently wait for medical marijuana to become available.  Plus I use a few choice four letter words to help get me through the day!   

Some thoughts about living with death...

Today was my mother's 96th birthday.  My sister and I spent the afternoon with mom and tried to celebrate with her.  Mom was awake and seemed to know we were there but most of the time it was difficult to know if she knew who we were or why we were there.  Over the years, watching my mom's health fail, her memory fail and then her mind fail has been extremely difficult.  I remember a vital person with energy and a love of life.  Now there is a shell with only a small glimmer of the life I remember. 
Today I also found out that the next oldest in my family, my brother, does not have long to live.  His lungs and bones are full of cancer and now he has pneumonia.  Although I have not seen him for years and we have not been on good terms for over 30 years, I still feel sad to know that his life is being cut short and with so much suffering.
Today got me to thinking about death.  My grandmother Bandel's end of life was much like my mother's, slowly dying from a series of strokes.  My grandfather Bandel was extremely vital until the last year of his life.  He died at 95 years old.  My dad died very suddenly of a heart attack at the age of 76.  So, looking at the family history, death can and has come in many forms.
When I got sick in 2002, I was very near death twice.  The second time I almost gave up and let myself go.  It wasn't that I feared death, it was that I decided I had too much to live for.  But being that close to death was almost calming in a strange way.  I felt that my death would be peaceful and would eliminate my suffering.  For me, the end of life is something we all must face and the best thing we can do is face it with courage and dignity.  However, for some like my mother, death comes slowly and the dignity is taken away.  For others like my brother, death comes too fast and with too much suffering so again the dignity can be taken away.
I guess I would advise that everyone reading this to plan for what will eventually come.  No matter what, all of us will face the end of our lives.  Jim and I already have our funeral arrangements made and paid for and our legal papers are all up to date.  So, if either (or both) of us face our end, we are ready.
And, I know that death is not necessary the end.  If nothing else, we will live on in the memories of those we know and love.  And my personal view is that what ever is our spirit, our life force, or our life energy will live on.  Who knows, perhaps we will come back in another life until we finally get it right.
Whatever the case, my father and my grandparents live on and are always with me.  They walk along my side and they inspire me daily.  Some day soon my mother and my brother will join them.  And in the years to come, I will be the one to live on and walk with someone too.   

Happy Birthday Mom

On August 28th my mother will turn 96 years old.  An amazing age when you think about where she came from and what she has gone through to get here.  Still, I have very mixed emotions about celebrating her birthday.
Severe dementia has robbed my mother of most of her ability to enjoy her years.  The beautiful smile of hers, the one she used to give so freely, is now a happy memory of mine.  That sweet voice that could calm my fears and give me hope, make me laugh and fill me with wonder, is never heard.  Our long talks that could some times last until the middle of the night have been replaced by holding hands and watching the world go by until it is time for mom to go to bed, often way before the sun has gone down.  Still, I hold on to the memories of the mother she once was, the person that is still inside the small, frail shell that she has become.
Mom was born in 1918 to a poor family in southern Minnesota.  When she was nine years old she was put up for adoption from an orphanage in St Paul.  She was almost immediately adopted by an elderly woman who treated mom as a slave.  Mom was there to take care of this woman, wash, clean and make meals.  Because of the conditions of her treatment, mom was returned to the orphanage and was then adopted again, this time to a wonderful couple who gave mom a happy childhood and taught her many valuable lessons in life and helped her to become a beautiful and well rounded woman.
In 1939, my parents were married.  Mom always said that dad was the love of her life.  She said that from the very first time she met him she knew that he would be the man she would marry.  They had five children, I was the last.  They lived through many tough times and still they remained happy and they kept an optimistic view.  Even when finances were tight and things didn't go as planned, mom kept the house going and kept food on the table.  When my father died in 1995, mom did her best to remain strong and positive.  She had lost the love of her life but still she kept going.
As the years passed, the robust flame that was the strength of her personality began to flicker.  On her 90th birthday, that flame had become a bit dimmer and her age definitely showed.  Still, she carried on and kept that sweet smile.  Today that flicker has grown dim but still something of a flame remains.
On my last visit with mom I was able to make her smile a couple of times and she even answered a question with a quiet "no".  I know my time with her is coming to an end and even a flicker of a smile can now make my day.  And I know that we can hold hands and watch the world go by until it is time for mom to go to bed.
So, to my mother, Happy 96th Birthday!!!
I hope I am able to live as you have, with strength, love, determination and that sweet smile.      

Hiding My Pain - Don't worry, I'm Okay...

Ever had a bad cold or flu and you just hurt all over?  Ever had stabbing pain shoot up from your feet to your hips?  Ever wanted to stay in bed all day because the pain was just too much to handle?  If so, welcome to my world.
I am often accused of not being totally honest about how I am doing when asked.  I usually say something like, "I'm okay" or "Can't complain" because, like a good Minnesotan, I do not want to burden people with my problems.  Plus, I do complain about other things, I guess I figure that my health issues are my problems, not someone else's.  Instead, I don't bother anyone with my pain because there really isn't anything anyone can do about it. 
Still, there are times when I want to be perfectly honest when I am asked, "How are you?".  I want to answer that I am not feeling great.  I hurt all over, I have shooting pain in my legs and I am totally exhausted all the time from fighting the pain.  That plus all the other health issues I face can, at times, make my life a living hell. 
But ever since I was a small child I have been an optimist.  I am a "glass half full" kind of guy.  So, rather than dwell on my pain and the health issues that living with AIDS provides, I try to be positive and not let my true feelings show.  However, that can also be exhausting. 
But to treat the pain there are always medications, pain killers of all strengths and doses.  And acupuncture.  And meditation.  And hot showers. And humor.  And getting together with friends.  And travel.  And.......  But the best treatment of all is the love I feel from my wonderful husband Jim.  When he smiles at me, when we share a joke or when he just lets me know that he is there, by my side, when he offers a helping hand or he just lets me rest.  Without him, I really would not make it.  He gives me the strength to carry on and to say, "I'm okay".
Of course, our cat, Rudi. helps as well.  When he sits on my lap and purrs or cuddles when I nap, he makes me forget the pain for just a while.  Unless his claws need clipping! 
But really, don't worry about me.  I am okay and plan to be okay for a good long time!!!!!

Memories

     Today Jim and I put together a shelving unit with glass doors (from Ikea) so that I could "properly" display my mother's china.  The china was mom's pride and joy.  Dad got it through his workplace as a replacement for mom's china that had been broken in a Thanksgiving mishap a year or two earlier.  As we washed, dried and placed the china into it's new home, I was filled with memories of my youth, a time before HIV, a time before I fell in love and a time before I was infected with HIV and way before my AIDS diagnosis.  
     My parents were both 42 years old when I was born so they were the age of most of my friends' grandparents.  They were a wonderful couple, a loving example of what a married couple should be.  My father adored my mother and though he did not have much money to spend, his job did not pay a huge amount, he loved buying mom gifts and making her smile.  My mother adored my father, she took care of the house as best she could and she took care of my father and me as well as working various jobs to keep money coming into the home.  My father grew 2 acres of vegetables at the Bandel farm north of Rochester and my mother canned and froze those vegetables so that we always had vegetables with our meals.  Both of my parents were good cooks and so I always had warm and wonderful meals. 
     My siblings were all much older than I was, the next older was 13 years my elder and the oldest sibling, my sister, was 20 years and 6 months to the day older.  Basically, that meant that at times I grew up as an only child.  My 3 brothers and 1 sister came and went in the household.  Some stayed for a time while others visited for shorter stays.  I always had fun with my siblings and with my dog, Ginger, as well as many other pets that ranged from mice to rabbits, chameleons to guppies, even a raccoon and squirrel.  I also enjoyed fun times with the neighborhood kids playing games like "Kick the Can" and "Car Tornado" in the summer and sledding and building snow forts in the winter.  I also enjoyed my time alone hiking in the woods in Quarry Hill Park or on Pancake Hill behind our house or reading books in my room.
     My father's parents lived about a mile from our house and often I would spend time at their home.  Both were wonderful grandparents.  My grandfather loved wood working and being out in the woods.  He taught me how to respect nature, how to see the animals and plants that live in the woods and how to hunt and harvest what nature had to offer.  My grandmother was a magical cook and baker.  If you were to look in her refrigerator and cupboards you would not see much food yet she could put together a wonderful meal that would fill the house with fabulous smells.  My grandfather also taught me to take part in government, something that I still do to this day.  He once said to me that a person had no right to complain about the government unless he was willing to participate in the process of government.  Both were "old fashioned" in many ways but both were also way ahead of their time.  My extended family, aunts, uncles and cousins were always part of the holidays and other events at my grandparent's home.
     My mother's china was kept in the cupboard above the sink in her kitchen and was used only for special occasions like holiday dinners and family celebrations.  My father got it for mom because a couple of years earlier, mom had prepared a huge meal for a special Thanksgiving dinner and as she put the large, heavy turkey on the dining room table, the legs gave way and the table with all it's contents crashed to the floor.  Mother's good china was smashed and the meal was destroyed.  I think my dad always felt bad for that so he saved points at work until he was able to buy mom this set of china.  It is a set for eight and although it isn't too fancy, it is well made and looks great. 
     Holding this set of china, seeing the pieces again, brought back the many memories of my happy childhood.  There are so many memories that if I was to write it all down, I could fill a few heavy, thick volumes with my autobiography.  Maybes I will tell just a few more stories in future posts. 
     Now back to the present,  I am living with AIDS and working to end HIV in Minnesota through education.  I am also working help those who are also living with HIV / AIDS by advocating in the government and speaking out about life with HIV.  Perhaps there are aspects of my childhood that helped prepare me in some ways to live this life and survive all the hardships of AIDS.