A Difficult Year and a Difficult Blog Entry to Write…

To all of my friends,

It has been a very difficult year for me at home and I have been postponing and procrastinating writing this blog entry.  Yet, I have had a hard time conceiving of adding to my blog until this is written.

First of all, my mother passed away at age 82 last May.  That was a difficult time and I felt a lot of responsibility for caring for the issues in the family and for my father who is 84 years old.  I have 3 brothers and they, too, had a difficult time.  My 4 grown children and 11 grandchildren were all together to remember my mom.  It was precisely during TechEd in San Diego that my mom’s funeral was held and that, of course, was the priority.  We all gathered to mourn her and support my father who is 84.  He is having a difficult time since then and for a number of months, I found it hard to support him due to my other challenges.  He is still very, very sad and I am worried about him still.

Many of you know that I have been married since I was 19 to Michelle who was 23 at that time.  I got 3 children (ages 5, 3, and 3) in the package deal.  In 1976, I was 20 and Michelle was 24, and we had a daughter, Jennifer.  All four of the children have always been mine in my heart and remain so to this day.  I am 48 years old and Christine is now 34, Mike and Rich are 32, and Jennifer is 28.  All of them are married to wonderful people and we are blessed with 11 grandchildren (two are 15 years old, three are 3 years old, and six are spread in between in age).  My wife, Michelle, always lived for the grandchildren.

Starting sometime around 1986 or so, Michelle became increasingly ill.  She had a myriad of different and painful issues from irritable bowel, back problems, severe sleep apnea (holding your breath in your sleep), bipolar disorder (which caused a great deal of confusion through the years), fibromyalgia, neuropathy (screaming pain from the nerves being angry for unknown reasons), and kidney failure.  We grew accustomed to months of time with her in bed and then gradual recovery and the ability to do things within limitations.  She was house and/or bed-bound for about 40% of the last 18 years and the challenges just seemed to mount as the years go by.  It is amazing how we all adapt and do the best we can.  For years, I was very sparing in accepting travel obligations even though we had great care for Michelle while I was gone.  Only at the beginning of this year did I start to accept more commitments as Michelle seemed to be on an upswing and some of the opportunities to see wonderful places were irresistible.  Michelle encouraged me to go and I have to admit that the break from watching the illness day by day was welcomed!  You don’t want to know about the phone bills, though…  By spring, I was just plain missing being home with her and became very firm in winding down my new commitments.  Of course, I had some that I had committed to (and kept) but I declined new ones as it just wasn’t worth being away… I loved the work and the sightseeing but hated being away from my wife.

Starting the day after my mother’s funeral at the end of May, Michelle started a horrible bout of neuropathy.  It was affecting her muscle control, some of the behavior of her organs, and most importantly, she was in constant pain like her feet and then her hands were on fire.  We rapidly brought my mother’s handicapped equipment to the house (as mom had a form of muscular dystrophy for years).  It was surreal to see my mother’s stuff employed in our house for my wife just days after mom’s funeral.  Fortunately, we had just moved into a house that we could build a wheelchair ramp for to allow accessibility but Michelle fought its construction as “she was going to be walking again any day”.  After a bit over 2 months, I overrode her and we built the ramp so she could get out of the house.  It is difficult to explain the pain of watching her screaming as she would transfer from the bed to the wheelchair and from the wheelchair to the toilet.  Life closed into the master bedroom and we did the best we could.  My sister-in-law, Faythe, and my daughter, Jenny, watched Michelle while I went to work and traveled to keep the remaining obligations I had for distant presentations.  I have to admit that going to work was the rest that kept me strong.  The pain pills were of some help, but they never seemed to be enough.  Michelle weakened as she went for months without walking.  Visits to the doctor were difficult and they were especially difficult since there was no explanation for the source of this pain although neuropathy does seem to accompany about 30% of the people with renal insufficiency (kidney’s giving out).  Everything was supposed to be stable and the doctors said that she was in no danger but that there wasn’t anything to do but jockey the use of pain medication for some relief.  Again, this was just a different form of the year-in and year-out challenges of chronic illness.

On September 4th, Michelle passed away at the age of 52.  At around 3AM, I awoke to find her apparently asleep without her breathing machine for sleep apnea.  This was the typical routine for about 14 years… only this time, she wasn’t breathing and was already getting cold.  She passed away peacefully that night and is no longer in any pain.  It was ruled an accident as she was only taking the prescribed dosage of pain medicine (oxycontin) and, while she was still in extreme pain, the medicine levels built up to suppress her breathing.  Narcotics can have funny effects in people with chronic illness.  I’m sure it interacted with the sleep apnea.  She simply fell asleep and stopped breathing.  I am so grateful that I was the one with her when she passed away and not one of the other family members.  It would have been VERY hard for one of my kids to have been there.

Michelle was my best friend and taught me more about life than anyone can imagine.  I spoke to her every single day for almost 29 years (with one day’s exception when she was taken to the psychiatric ward while I was racing back to town from Germany in 1997).  When I met her, I was very much into reading, computers, and (of course) having fun and being silly, too.  What she taught me was the value of every human no matter what their station in life and no matter what their abilities.  Money, talent, and intellect are simply tools.  What makes a human special is the character of their heart and their soul.  Each and every person has that in them and Michelle taught me to stop and look at the person and love them for who they are.  She was my partner for 29 of my 48 years and I cannot separate my character from hers.  She is with me and will always be with me.  I miss her so much and yet am completely at peace knowing that she is not hurting anymore.  We have a legacy of a large family and I have some new habits to cultivate.  Being a bumbling male, I would stumble home from work to find a riotous family gathering and would just join in.  It now falls to me to ensure that these events happen regularly (although my grown kids are pretty good at making this happen, too).  Christmas shopping will be VERY different…  I always just bought for Michelle and she arranged everything else (frequently from her sickbed by sending others out mall-ing on her behalf).

It has been almost 2 months now.  The children are regaining their lives and working on doing normal things.  The grandchildren are concentrating on school.  I am getting back into work and it feels good… at first, it was so overwhelming to even have discussions about work as I felt raw and lost.  Knowing how hard it is for me to write, I canceled my commitments for new presentations for a while and kept the speaking engagements based on existing work.  Now, I’m back to writing new material.  Two weeks ago, we held our Strategic Architect Forum in Redmond.  I presented and had a number of customer meetings.  The next day, I flew to India (my first trip there) where we had another Strategic Architect Forum in Bangalore.  After that, my friend, Gurpreet Pall, and I flew to Delhi and had some meetings.  Then, I was privileged to travel with Gurpreet to his home town of Chandigarh via a 3 hour train ride.  We spent 3 days visiting with so many family members!  It was very special to meet all these interesting, loving, and accomplished people.  I am humbled at the opportunity to see them and their lives so closely.  I can’t tell you the number of times I saw something and thought how I simply couldn’t wait to tell Michelle and show her the pictures… life moves on but sometimes our hearts move on a little slower.  I scheduled 2 days of layover in Singapore to sightsee and I just didn’t have the desire.  Instead, I simply enjoyed doing nothing for two days but catching up on sleep and taking an occasional walk.  I barely ate anything as it took 2 days to digest all the wonderful food that Gurpreet’s family kept feeding me!  I think this was one of the first times in memory where I just plain didn’t worry about doing anything.  Years of fighting to get work done while dealing with chronic illness has taught me to squeeze every productive minute possible and that is quite a change to let go of.

It is easier now in many ways.  I know after my hectic schedule of commitments slows down, I will have more time.  There have been so many small ideas that I have wanted to blog about in the last few months but somehow it seemed insincere without sharing about my loss and so I let them go.  Still, I kept procrastinating writing this until I had the time to focus and share all my feelings.  I am getting stronger and I will be fine.  My kids and grandkids are there and we are all supporting each other.

Thank you all for caring and being interested in my life.  Next post, we will have some fun with architectural stuff… there’s LOTS to share!

Love to all,

Comments (16)

  1. Barry Talks! says:

    Pat Helland has the coolest office in the universe.

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