Oh my aching back

Lying in the grass, waiting for the show.
Lying in the grass, waiting for the show.

So I threw my back out last week they day after I was in the emergency room for a stomach ache. Three days ago I started waking up every night in a night sweat. Yes, old age is upon me. Meanwhile my cousin texted to say she’s been diagnosed with a genetic disease that could explain a lot of the premature deaths in the family. The disease is called hemochromatisis. Coincidentally it was found during an investigation into stomach pain. No word yet if the two are related.

I tried to just get a doctor to tell me to take some Prilosec and see if my tummy ache would clear up. The urgent care doc sent me to the ER without much investigation. I called my doctor and he said yes, go to the ER. My stomach hurt a lot so I went to the ER. Once the ER heard about my underlying AFib I knew I was in for a long day of tests and so I sent Burt back to work. A cast of thousands took me around for a CAT scan and chest X-ray and I gave up 8 vials of blood. 6 hours later the conclusion was there was no life threatening blood clot, take some Prilosec and go see your regular doctor in a couple of days. Too bad that’s not really easy. I’ve been taking the Prilosec and my tummy still hurts but I am not going to the ER. I’m consulting with my doctor on logistics.

We were going to stay in Seattle and do another job but decided against it. If we’d stayed I’d see a doctor here. Now we are headed to Montana for two weeks, then back to OR for a little bit of work an the eclipse and then down to California for a job before heading to Arizona for Portal Irish Music Week and some more work. I’m thinking of calling doctors in California and making an appointment for September there. Ideas welcome.

Meanwhile the nightsweats are almost welcome. At least I know the cause roots, stem, and seed. The old ovaries are saying good night. Some 55,000 extra eggs in there with no where to go. Menopause is no longer a question but a fact. It’s been 81 days since I’ve seen my ‘friend.’ For the first time in my life I have a supply of products stashed everywhere I might need them (surprising irregularity will get a person organized) and no need for them. Oh, the irony. Regarding the unbelievable quantity of eggs we carry I always find it amazing. These eggs were in me while I was in my mother and they will come with me to the grave. You can’t have them.

The hemochromatosis is an interesting development. I’m planning on more thorough testing when I get to a doctor. The ER visit at least revealed that my liver is functioning properly so there is likely no problem now. I’ll get tested. If more of my relatives get tested we can figure out which branch of the family is carrying this thing and perhaps save some future lives from foreshortening. It’s an odd disease and frequently overlooked. In hemochromatosis the body absorbs and stores too much iron in the organs. Organs targeted vary.  The organs where your body stashes the iron begin to cause trouble and so symptoms vary greatly. My aunt, dead at 56, had congestive heart failure for no known reason. My mom had dementia at an early age. It could be these two sisters actually shared a genetic disorder that manifested in different ways. They both had thyroid problems and that is a common problem as well. Also my mom had terrible arthritis in her hands long before she showed signs of dementia. There’s a lot to think about.

Meanwhile my cousin, sad but lucky, will start treatment. To get rid of iron they take your blood. So, blood letting is inconvenient, tiring, and has a reputation for being a bad idea (see Geo. Washington) but could be worse. She’s young and hopefully this was caught before significant damage occurred.

Also, Mimi has definitely stopped eating regularly. It’s as if the vet visit pushed her to say, “Enough of this crap. I’m ready.” I’m feeding her wet food by the tiny dollop a few times a day. She seems to be rallying. Fingers crossed.

Mimi got a check up.
Mimi got a check up. She says, “Hi.”
Fircrest fire in Seattle
Fircrest fire in Seattle
This caught my eye. I imagine a lot of people tried to put the fire out.
This caught my eye. I imagine a lot of people tried to put the fire out.
Burt's newest assistant.
Burt’s newest assistant.
The new storage area.
The new storage area.
Hospital gurney ride.
Hospital gurney ride.
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Hmmm. Struggling here.

OCW ready for a bath
OCW ready for a bath
This orange crowned warbler is still not showing its orange crown.
This orange crowned warbler is still not showing its orange crown.
Another new bird eating oranges. Cactus wren.
Another new bird eating oranges. Cactus wren.
Ed and Burt
Ed and Burt
The gang. Our last night together in Mexico.
The gang. Our last night together in Mexico. Dots is Janet’s mighty cat. He’s not afraid of anyone.
Getting the camper on top of the truck.
Getting the camper on top of the truck.

Here is the writing assignment for today from Zoë Dearborn: Think of a highlight of your life. A moment or time period where you felt uplifted or inspired or deeply engaged in life. Free write for 15 minutes. Describe this memory in detail. Emotions, senses, images. Draw or illustrate this experience. What truth does it reflect to you about yourself? Enjoy.

I’ve been mulling this over since the middle of the night. I’m not getting anywhere singular. I was so paralyzed for a while I opened it up for suggestions with Burt, Rosemary, and Ed. They have all seen me through thick and thin. Burt suggested when he flipped my raft. I’d had some thoughts on epic outdoor adventures but none struck me as lasting or interesting now. I forget what RR and Ed said.

Recent life events cast a light on the feeling of good enough and exactly right for the moment that I feel more happy about how I was in crisis than I was in a stereotypical happy moment. The 10 minutes between noticing Olive was poisoned and driving her to town strike me as some of the worst and best of my life. I did exactly what needed to be done and I was aware of it in the moment. I knew only a veterinarian could save her life. I disregarded politely bidding ‘adios’ to my friends. I did not try to save her myself or provide comfort during the drive. I disregarded traffic laws. I stayed focused. I got her to the vet on time. I didn’t panic. I felt time passing by. I saw cars in slow motion. I was in the moment. I don’t want a repeat but I can accept that I did what needed doing and I did it well. The end results were out of my hands and I wonder if I would feel okay about this had Olive died.

Someone recently asked me if I sang at my mother’s funeral. I told her how I had and that it was a transformative moment. We’d struggled to rehearse three pieces. None of the practicing went smoothly. Either Burt or I would flub a line, loose the chord progression, or just start blubbering. I felt so sad but at peace about my mother’s death after such a long illness. The conflicting emotions were at home side by side. My mother sang and played guitar with a church group when I was a child. The moment I stood up to sing for her at her memorial service I felt a column of light fill me. I knew I was doing the exact thing I was supposed to do. It could be a good or bad performance and it was exactly right. It felt fantastic. I was singing for my mother. It was the right thing to do. I was enlivened. It felt flawless. The words of 500 miles soared across the space. The feeling of sounds leaving me felt beautiful. It was stunningly easy. The actual act of singing was such a comfort.  I wonder if I’d feel the same way if we had fallen apart and I muffed it? I wonder if seeing the video (Yes, can you believe it, the funeral home filmed the service. ugh.) would ruin this moment for me? I’ve told my father I never want to hear or see the performance. Some art is meant to be ephemeral. Never to be seen or heard again. That whole week I felt so useful and available to my father. It was a good thing in a bad time.

So I am struck by how the two things I feel most drawn to are so very recent and such obvious culminations of life’s practice for me. First aid, EMT training, karate, adrenaline sports, music, years of performing, yoga, meditation, all these things culminating in my ability to do what I needed and or wanted to do at the right moment. If I could bring that presence in on a daily basis outside the realm of tragedy or catastrophe I think I would be calmer and more relaxed. We’ll see.

 

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Safe in Portal

It's an 80s Christmas
It’s an 80s Christmas

Mourning a person so long lost to us is strange. I was told by more experienced people that the real work of grief lay after my mother’s death even though the brain has long since said good-bye. I remember the day over 6 years ago when my mother pointed to a picture of her husband and three kids and asked who they were. When I gently said, “Those are you kids,” she responded with, “I don’t have kids.” Mom was adamant. I tactfully did not try to convince her I was one of these dirty rotten tricks someone was playing on her. This negation of my existence was a step in the disconnection. When she stopped responding to mom and I started calling her Patty was another. It was all very painful. Add to that the years of her being paralyzed and non-verbal, years of no free will and I had to turn away and tell myself she was gone. This shell of a human was not her. I could not bare to believe she was in there. So, of course, I thought my work was done and death would be a peaceful release. And while I was right mom’s passing is a release and I know it is good I have it all wrong. Our suffering continues. It’s a new loss. As some say, Grace isn’t there on demand. We wait for it. It comes.

The first twelve hours I felt euphoric. Flying, light, giddy. I was so glad mom had finally left her tortured body I felt guilty for feeling good. I embraced it despite the guilt.  Maybe mom was picking me up. Soon though I was immobilized by despair.  Burt carried me through the shock. The wallowing, snotty bawling  didn’t last long.  By the time we reached dad’s I knew how to do what needed to be done. Now I am jobless and without tasks. Our truck is in for repair and we are in limbo. I can remember the euphoria and it makes me smile. I am glad I noticed. I’m hopeful it’s what we feel when we finally let go. Now I merely burst into tears for about 30 seconds when anyone asks me how I am. Burt says that’s a good thing. Release, compose and repeat.

Pat and Til
Pat and Til
Mom's poem
Mom’s poem
Pat and Til Wedding
Pat and Til Wedding
This is 21 years after their wedding.
This is 21 years after their wedding.
Pat Ryan at age ??
Pat Ryan at age ??
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Here’s Mom’s obituary

Here’s another little glimpse of mom. The version for the funeral home.

Patricia Eileen Ryan was born on November 24, 1942 to Lorraine and Edward Ryan in the Bronx, NY. She grew up in Keansburg, New Jersey and graduated from Red Bank Catholic High School. Pat immediately joined the work force and commuted by ferry to NBC headquarters in NYC. She was on the job for both the Kennedy inauguration and his assassination. This early career excitement lit in her the desire to find meaningful work her whole life. In 1964 she married Til Zazzali. Pat and Til settled in Holmdel, NJ and had three children Susan, Christian, and Matthew. For about ten years Pat gave up work and took care of her kids and home. When the kids were older Pat returned to work. Eventually she landed an entry level clerical job at Fort Monmouth working for the Department of Defense. Pat retired from public service after a 22 year career where she had worked her way up to become one of the first female civilian executive officers, eventually working for three generals. While she was successfully climbing the career ladder she was simultaneously attending Brookdale Community College and raising three teenagers. Pat had an eye for beauty and great design skills which she applied to home remodels, gardens, and interior decor. She loved to share her green thumb and eye for color with family and friends. Once the kids were out of the house Pat and Til traveled and enjoyed themselves like newlyweds.

Pat was preceded in death by her parents and her sister, Ellen Perciaccanto. She is survived by her husband of 52 years, Til Zazzali, her three children Susan, Christian and Matt, daughter-in-law Kernan, son-in-law Burt Mittelstadt, grandchildren Parker and Isabella Zazzali, niece Cara Perciaccanto, and brother Edward Ryan and sister-in-law Maureen.

Pat and Til were lucky to be surrounded by a community of caregivers that helped extend her life and keep her comfortable during her 14 years with Alzheimer’s disease. The family would like to particularly thank Deb, Vi, Sandy and the many hospice staff, including Sheena, Priscilla, Melanie, and Brooke for their compassionate and professional assistance.

We’d like Pat to be remembered for her love of travel, gardening, crafting, and her family. She brought beauty to all our homes and gardens. If you would like to make a donation in Pat’s memory please give to the Alzheimer’s Association at 225 N. Michigan Ave., Fl. 17, Chicago, IL 60601or online at www.alz.org.

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Patricia Eileen Ryan Zazzali

Here's the last photo of mom and dad.
Here’s the last photo of mom and dad. November 24, 2016, her 74th birthday.

I did what she wanted me to do. I sang Ding Dong the Witch is Dead but my heart wasn’t in it. At 1:30 AM this morning my brother texted me to tell me our mom had slipped away quietly. Christian had arrived only hours before. Maybe he had the power to help her let go. It was apparent when I saw her a few weeks ago that she was heading towards the door and I was glad I consciously said good-bye then.

Alzheimer’s is a cruel disease. I feel like I’ve been mourning my mother for a solid ten years. Back when she sometimes knew who I was was the worst. Recent years were hard because I hated seeing her trapped in a physical shell she had lost control over. Now she is free and I feel relief. My thoughts, as always, are with my father who has carried this burden and carried it well. He could not have taken better care of his wife, our mother. He did it on his terms and he did what he thought was right. While I felt my mother had left long ago, his wife was always in there and he treated her accordingly. His commitment never wavered. I won’t be canonizing him here. I’ll leave that to Pope Francis. As dad says he finally figured out what my mom wanted. It just took 50 years to learn to be the best husband. Unconditional love and acceptance. It’s a lesson for all of us.

As for the facts of Pat, how do I distill her memory and rinse it clean of the stink of Alzheimer’s? I’d pushed aside the idea of who my mom was for so long so I could accept who she had become. Only in the hours since she has died do I feel room for the woman we lost. On the flip side Alzheimer’s gave us a brief gift of a charming childlike person who had left anger and resentment behind. It gave us a window into Mom as a delightful child.

She loved nature, food, traveling, and gardening. I caught most of it from her. She was wielding a chainsaw in a tree in her late 50s. Prior to that she had not used a chain saw and hadn’t been in a tree in 40 years. Not the best idea and possibly a sign she was losing her wits but it was her. She could decorate a home and make it feel cozy no matter the era and locale. We lived in colonial, we lived in country, and lastly elegant beach. She taught me to play Scrabble. No abbreviations. What’s an abbreviation? She encouraged me to read. My favorite story about learning to read is this:

My mom offered each of her kids a dollar a book to encourage reading. She paid me $1 once and I never stopped reading. She paid my brothers over and over and over again and they would never read without the bait.

She learned to play music in her 30s. I did the same thing. She was a career woman and put herself through school while working. I helped her with her algebra. She pushed me hard but I think she was pushing me to defy society’s expectations for women. She knew I needed to get away to turn into who I was meant to be. She never asked for grandkids. She never complained that I moved too far away. She was unsentimental with me. I think I caught that too.

I can’t do more now. I am grateful Burt and I had the time 6 1/2 years ago to live with mom and dad for a few months. Back when she was companionable but I could care for her. I felt like I did what I could, when I could. Now it’s time to help Dad. Maybe someday you’ll meet him.

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Saw Mom and Dad

Mom and Dad and me.
Mom and Dad and me at their favorite restaurant.

It’s been 14 years since I first realized my mom was having troubles with her memory and analytical abilities. Fourteen years since I noticed her repeating questions. Fourteen years since she struggled to drive a stick shift. Fourteen years since she couldn’t read the map of Yellowstone National Park and thought a field of hay bales were sheep marching in formation. It’s been more than five years since she last recognized me. This last visit she no longer seems of this world. She seems like she’s departing. Mom still eats without too much trouble. She had a bad week last week and we were all having the hard talks but she’s rebounded a bit since then. During our visit she ate well. Drinking was a struggle. When I bid her good bye and leaned in for a kiss she took a nibble out of my cheek. Funny and no so funny. Dad was holding up well in person. We get emotional over the phone. I feel okay but threw my back out and caught a cold so that tells you I am not really down with this. I never hurt my back and nobody else had a cold.

I guess we’re all bracing ourselves and wondering how this will go down and how long it will take. I feel like my mom has had a terminal disease for over a decade but only now is she actually dying. My cousin Cara was visiting and we both laughed and groaned with fear at how we both hope she doesn’t choke on the morsel of food when we happen to be the ones feeding her. It’s a grim kind of humor. At times mom’s breath is raspy. One time I gave her a bit of juice and she started to cough a bit and I just had this moment of too much science and imagines little aerosol bits of juice heading to her lungs. Pneumonia? I hope not today. It’s hard to hope for a peaceful end and hope it doesn’t happen on your watch. I’m not sure the anticipated relief will come when mom finally dies.

I remember back to when I had a dream of taking an ax to my mother’s head an all her thoughts spilled out. These days I don’t get the sense that there are any more thoughts trapped inside. Dad will disagree. He feels her love and I believe that is still there for him. I hope she’s not suffering but I can’t be sure she isn’t. As always I am grateful my dad is able to do this as he sees best. The choices are his.

Dad and his mini-me.
Dad and his mini-me.
Not a deep moment. Just enjoying the sunshine.
Not a deep moment. Just enjoying the sunshine.

 

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Alzheimer’s Update

Mom's hands
Mom’s hands

If you saw the movie Still Alice it might have left you with the feeling that you had a picture into life with early onset or younger onset. I thought the movie did a great job depicting the first few years but it ended just when the physical effects get really tough. It failed to show Alice needing help to eat, drink, or bathe. There was nothing about her days with no language, intermittent sentience, the daily grind of handling a nearly inert body. My dad has had my mom’s entire care in his hands for nearly 5 years. She no longer can move under her own accord. The end is not in sight.

Dad does amazingly well but the toll is obvious to Burt and me since we see him only intermittently. He’s got help every day but he’s lonely. We all miss mom. She was funny and kind as a parent to an adult child. During this trip I only saw one moment of awareness during an interaction with me. There was no recognition. She merely said uh huh when I asked if she was thirsty and then she took a big sip from the straw I offered her. Her muscles are contracting. The body is stiff and beginning to curl into a fetal position. Her eyes are usually closed. The lack of recognition is sad but freeing. When a mother forgets their child it is a profound cutting of the chord. I remembered how she liked to shop and would have enjoyed helping me pick out some new clothes. We all get a laugh out of feeding her foods she would have rejected if she knew what she was eating. This trip is was mussels. Another time it was eggplant parmesan. Once we fed her a bean burrito. I think it’s harmless and humorous. I wish and hope she is comfortable but I can’t really tell. Nobody knows how long she can last like this. Dad says he will as long as he must.

 

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