Search

"I got to thinking one day about all those women on the Titanic who passed up dessert at dinner that fateful night in an effort to 'cut back.' From then on, I've tried to be a little more flexible."
(Erma Bombeck)

Powered by Squarespace
Saturday
Aug052017

Losing Mom

Virginia and Don Benedict, 1946

I've put off writing this blog post because it seemed like it would be bottomless. Where to even begin?

Mom died on Thursday, July 6, 2017, at Skagit Valley Hospital, after nearly four days of fighting for her life with a severely fractured skull. The ER doctor said the fracture was several inches down the back of her skull.

She was on morphine and oxygen for most of the time she was hospitalized. She fell on a Sunday night and died early Thursday morning.

On Wednesday, our family met with the hospice team and a palliative care doctor and made preparations to take Mom to a nursing home to finish out her days. They anticipated she might live for another week or two.

On Thursday morning, I packed my bag with a camera and a prayer book. I planned to get to the hospital early, before anyone else, read Psalms and pray by her bedside. I also planned to take photos. I know this may seem weird to others. However, I had been tempted to take photos earlier, but didn't want to weird out other people in my family. A friend (a fellow creative), messaged me and suggested that it might be healing for me. I knew she was right.

Just as I was ready to leave , the phone rang at about 7:15 a.m.. It was the hospital calling. I hesitated before answering. Finally, I picked up the phone and heard the words, “Your mom just passed.”

The first thing I said was, “Oh no...I wanted to be there with her.” But that feeling was immediately followed by relief. So. Much. Relief.

I should mention that I am a guilty person. I mean, I feel guilty about just about everything—things I don't really need to feel guilty about. I think I'm hard-wired for it and the way I was raised certainly encouraged it (approval-seeking behavior, that sort of thing).

I've spent most of my adult life trying to overcome that part of myself, sometimes over-compensating and then going numb because I can't bear the feelings of guilt.

Of course, I immediately felt guilty for feeling relieved about Mom dying. But I've mostly talked myself out of that, although it's a continual struggle.

The week she died was miserable and I was angry and emotional and everything else. But once I accepted it, I felt okay, as long as I didn't go back and think about how she died or how sad it was that my dad was alone. When I thought of those two things, I couldn't handle it much.

A stranger on Facebook told me that she was sorry that my mom died as the result of an accident. She was the first person to use that terminology, but I appreciated what she said because it was so apropos. The accident leading to my mother's demise gnawed at me because it was random and violent.

I suppose part of my anger was having to let go of my planned trip to Ireland for a one-of-a-kind photography workshop (and also a bucket list trip with my husband). I had been planning the trip, really, starting the year before (mid-2016). I had applied and was accepted to the workshop in January (a miracle in itself, as so many others applied as well), and paid and prepared for it over many months. We planned to leave the same week all of this happened.

It was not to be. It was no one's fault—I get that. It's just that it was a crushing disappointment and I lost about $4,000 of very hard-earned money in the process. Adding that emotional and financial blow on top of my mom's death seemed the cruelest of ironies.

Ladies toasting to me and Mom's memory from IrelandThe interesting thing is that I felt I had no one to talk to about that. It seemed so insignificant in comparison to what happened with Mom, so of course, I felt guilty. But I needed someone to validate the disappointment. Unfortunately, there were very few people who allowed me to talk about it without trying to smooth it over with a tidy, “There will be time for trips later” or "You can write it off on your taxes."

I also had a few people tell me that it seemed God had orchestrated things to coincide with my vacation. For a number of reasons, if that were true (and I don't agree that it is), it would only serve to make me feel like God was the ultimate killjoy (and I don't believe that, either).

One friend remarked, “Well, you're on a different kind of journey now.” To tell the truth, that helped. It made me realize that God had another kind of journey for me that was more important. I know for people who aren't believers, that must sound kind of crazy. However, a Christian is challenged to trust that God permits circumstances in our lives (even if He does not necessarily will them to happen), and that He will always use circumstances in our favor (eternally speaking), if we trust Him. I'm not talking the 'prosperity gospel' here. I mean, things that actually benefit our souls. So, my challenge was to accept and trust that God had a better plan than my feeble mind could fathom.

Certain things stand out in my mind from the week of Mom's death:

The kindness of the doctor who was overseeing Mom's care—how he genuinely seemed compassionate toward our family (he also looked like he was about 12).

Having our priest, Father David, visit Mom two days before her death and praying for her.

Stroking Mom's hair and telling her I knew she couldn't talk, but it was okay, we were there with her and we loved her.

Sitting in the room with Mom for five hours after her death until we were ready for the hospital to take her to the morgue.

Watching Dad say good-bye to his wife of 71 years. He said to her in the kindest, gentlest voice, "God is going to take care of you now. You're my girl."

Standing outside the hospital morgue when the mortician came out, handing me Mom's wedding ring before he took her away.

Mom didn't want a big, fancy funeral. And the truth is that most of her friends and loved ones preceded her in death, so we didn't expect many to attend, anyway. We planned a short grave side service with family and anyone else who wanted to attend.

I was amazed and touched when several people from Mom's past showed up to her grave side service. It was truly moving. Dr. Brooks, her long-time employer, showed up with his wife. A woman from Mom's Soroptomist days showed up, having heard the news of her death just the day before (she later shared some memories, calling Mom a “gem”). Several of my brother's friends who considered her a “second mother” and a few of my friends showed up as well.

My husband and my son-in-law sang a short Orthodox hymn at the service and an old friend and pastor from our days at our previous church officiated.

We had a time of sharing during the service. I told the pastor that I would start it off if no one else wanted to. I had no idea of what to say. My brain was in a fog; there were too many things to say. However, the morning of the service, it came into focus.

Here is a bit of what I shared:

Darrell and I always knew that we were lucky—what I would call blessed—to have Mom and Dad as our parents.

They were always supportive and were the kind of parents we could count on to help us out if we were ever in a pinch, whether it be financially or in any other way. I took it for granted that everyone had parents like that, but as I grew older, I learned that was not true. We truly were blessed with great parents.

Mom was not the sort of person to keep her opinion to herself, so both Darrell and I recall many times when we would get angry and argue with her. But from this vantage point in life, that all fades away to a kind of trivial thing now.

Underlying it all was a deep love that Mom had for her children and grandchildren. She was raised to take care of her own and made that very obvious. Her family was everything to her.

Whenever something good happened to me, Mom was the first person I wanted to tell. And whenever something bad happened to me, I wanted to turn to Mom for comfort.

A couple years after cancer treatment, I had to have a test to find out if my cancer had returned. After the test, I showed up on Mom's doorstep. She had macular degeneration and was legally blind. But when she opened the door, she recognized me, pulled me into an embrace, and said, “Oh, I've been so worried about you.” I felt then that if all others failed me, my mother never would. She would always be there for me.

She started to go downhill these last few years, due to dementia. And it was very difficult for us because we missed our mom so much. She always had a good sense of humor, she was witty, she was smart, she was practical.

She could be “sassy,” but she was a total softie inside.

I'll never forget her admonishing me not to feed the stray cat who was hanging around our house when I was growing up. She would always make a big deal about how we didn't need any animals to take care of.

So, to my surprise, who should I see one morning when I opened the garage door, but my mother, bent over with a saucer of milk for the hungry kitty.

That scene is indelibly etched in my memory because it summarizes Mom so well: she wanted you to think that she led with her head, but she really led with her heart, almost always.


As I wrapped up, I shared this:

Mom and Dad's love story has traveled far and wide and that brings me a certain amount of comfort because it deserves to be told. I want the world to know who they are. Yesterday, I shared a very emotional photo that I took while Mom was dying--on a photography forum. I was hesitant to do so, but I felt that I needed to share...and the image just seemed too raw to put on my regular news feed.

I had no idea the chord this photo would strike with so many people. Over 1,300 people reacted to it, with over 230 comments from complete strangers who were touched and in tears.  Some of them were prompted to share their own stories of loss. All of them offered condolences and words of comfort:

"How beautiful that you were able to witness this rare type of love throughout your life, and how great it was you were there for her until the end."

"You will look back and be so thankful for these moments and they pay such a tribute to the beautiful life and love they shared together."

"This made me weep. True love. I'm sorry for your loss but what a legacy of love and faith."

Words from perfect strangers were a reminder of how blessed I have been to have my parents and be a witness to their 71-year love story.

The day after Mom's grave side service, I impulsively drove to the cemetery, 40 miles away. It was a beautiful day and no one was around when I visited. It was quiet, with a gentle breeze. I could hear birds sweetly singing and somewhere in the distance, there were beautiful wind chimes. Everything about that day was soothing and beautiful.

I sat for quite some time in the shade and took it all in. As I was preparing to leave, I turned and saw this "Cathedral of Nature" (shown left), as one friend put it, with the cross at the end of the road. The image I captured that day brings comfort and will always be a reminder of the peace I felt that day.

I was expecting to feel much more overwhelmed, depressed, and sad with Mom's passing. Then again, I wonder if the reason I'm doing so well is because God is merciful and prepared me over this long three-year journey with Mom so that, by the time she died, I was prepared and ready to let her go. Dementia truly is the “long good-bye.”

People have told me that grief comes in waves, often when you least expect it. I am finding that to be very true. I thought I was handling everything really well until this last week.

I was forced into menopause nine years ago when I underwent chemotherapy for breast cancer. Up until that very first treatment, I had periods. After the nuke blast from the chemo, of course, it all stopped and I went into what is known as “chemopause.”

This last week, after nine years of menopause and hot flashes, the bleeding returned—briefly. Obviously, I was shocked and freaked out—this is not normal for a menopausal woman.

I knew something was wrong. Googling didn't help much. I learned that the cause could be all kinds of things, including cancer. So, I called my health provider and set up an appointment.

All of the cancer head-trip stuff returned like an old friend. I tried to rein in my anxiety and just wanted to get to that appointment to find out what was up. Yesterday, I had the appointment. No abnormalities were found, thank the Lord.

Here's what I learned from my healthcare provider and more research on the internet: one cause for the aberration may be attributed to emotional distress such as grief or anxiety.

Seems too much of a coincidence that it happened at this particular time when I've been dealing with the death of my mom and strong emotions. Once again, as so many times before in the last nine years, I felt I had been granted another reprieve when my healthcare provider gave me the all-clear.

To put it mildly, I'm a bit freaked out with the physical evidence of how my body is so affected by my emotions. I was not even aware of being under that much stress. I thought I was handling it well.

After witnessing my mom's death this last month and then experiencing this most recent health issue, I have the sense that I am standing at some kind of precipice. I feel both unmoored and—strangely--a renewed sense of myself and making the most of whatever time I have left.

Awhile back, a friend advised me to look for the beauty in Mom's last months, so I did.

I was privileged to hold her hand and guide her, just as she did with me as a child. I was honored to sit next to her and kiss her soft cheek, just as she did with me when I was young. Her illness brought out fears and anxieties within me, but it also softened my heart and helped me to look beyond appearances to find the dignity of Mom's humanity—something we all possess, no matter our outward abilities. I was challenged to love her unconditionally, for she could no longer do anything for me but be who she was—my mother.

I'd like to leave you with a poem that my daughter wrote last year. Her words are beautifully written and bring me much comfort.

Death's Appointment in Time

Time is a woman weaving her art
Embroidering each stitch with
Grace, Purpose, Guiding
her thread through the Fabric of Space so that
every color shines,
some with splendor, many with meekness.
And we beneath her expansive tapestry,
Gazing above at the marvelous work,
see only the underbelly
of strings and knots and clumps and mess.
But if we had not first been chosen by her thread
to plunge into that chaotic
realm, then she could not reveal
as we rise through the tangles
the indescribable Order of the Angels of which we
play a part.

Wednesday
Jul052017

My mom is dying and it's torture to witness

My mother is dying and it's torture to witness. I hate it. I hate every agonizing second of it. Maybe I will look back on it and see it differently. I hope I do.

I place my hand on her forehead and stroke her hair back. Her eyes are rolled back, half-closed. She has oxygen in her nose. She is struggling. Every. Single. Breath.

Yesterday was the worst. Or, at least I hope it was the worst. Something tells me there are more days for my residency in hell.

I'm trying to find the light, the good, the sacredness in this situation. After all, I'm a Believer.

I pray the Jesus Prayer over my mom continuously. I hold her hand and stroke her hair. I don't know if she knows it's me or if she even hears us. But I tell her I love her.

Just before my husband and I arrived at the hospital yesterday, she had choked on her own saliva and vomited. Blood mixed with saliva was drooling out of the side of her mouth. She was making a horrible gurgling sound with every breath. Her eyes were vacant and there were four nurses trying to move her body into a better position. She groaned with pain. She cannot speak.

After she was cleaned up and they laid her on her side and propped her head to the side with pillows, I sat down beside her. The bed rail was in the way, but I did my best to reach over it and touch her head. I felt myself collapse inside and began to softly cry, then sob, and the sobs kept coming. I was embarrassed because everyone else in the room was behind me, quiet. But the embarrassment soon faded away and I felt the sobs heaving from my body, coming from deep inside of me, helpless to stop them.

I hate this. I hate seeing my mother this way. I want to take away her pain and end her suffering. I hate for my dad to be left alone.

I'm 60 years old...I have had the blessing of having both parents for far longer than almost all of my friends. But, you know? Age does not ameliorate the loss of someone you love. This is still my parent and I am still her child.

Five nights ago, I had my last conversation with her, but of course, I had no idea it would be our last. My dad had called from their assisted living place to tell me that Mom was refusing to take a shower. “She won't let them give her a shower,” he complained.

I could hear the frustration in Dad's voice, pleading for someone to do something to help. We  had visitors that night, so I walked out on to our deck to talk to dad away from their chatter. Yelling into the  phone (he is nearly deaf), I told him not to worry about it tonight. I asked if he could put someone on the phone (I meant one of the aides from the assisted living place). Instead, I heard him grabbing my mother and putting her on the phone.

“I'm not going to take a shower,” she said.

“Mom, why don't you want to take a shower?” I asked.

“Because I have already had three. They have already given me showers. I'm done with that.”

And so our conversation went. I gave in. There was nothing I could do in that moment, so I told her, “Mom, you don't need to worry about taking a shower tonight. But the next time they come in to give you a shower, you need to take one. It's for your health.”

“I'm not saying I won't take another one, but I don't need one now.” she responded.

Then she continued with a frequent theme. “I want to get out of here,” she said. “I don't like it here. I never wanted to come here.”

“Mom, if you don't let them give you showers, you may end up having to live somewhere away from Dad,” I countered.

“Well, that is alright with me,” she asserted. “I don't think he's all that nice to me, anyway. I just hate it here. I feel like I want to cut my throat with a knife.”

Those were the words that stood out the most from the whole conversation. I knew she didn't know what she was saying, really. I was actually impressed that she put that many words together coherently because lately, she had not been speaking much and she spoke in short sentences. It was almost a comfort to hear her speaking those words, even if I hated what she was saying.

That was Thursday night. I  had a big trip to Ireland to get ready for. I had a huge list of “to do's” to accomplish before we flew out on the following Wednesday.

So, I wrote “Visit Mom and Dad” on the list, but kept pushing it back another day because every day seemed to fill up with errands and work.

On Sunday before our Wednesday trip, I ran more errands. I kept thinking of more items I needed to pick up ahead of our trip. I ran to Fred Meyer, which is only blocks away from Mom and Dad's assisted living facility.

“I should run over to see Mom and Dad,” I thought. But then I looked at my watch and remembered that they would be eating dinner right about this time. “Besides,” I thought, “our dog is at home in the crate and she needs to be let out. And I need to feed her. I'll come back tomorrow when I have more time to visit.”

Later that night, at about 7:30 p.m., Dad called. “Your mom fell down,” he said. (She has fallen several times and fortunately not broken any bones. We got her a walker to try to prevent any more falls.)

“What happened?” I asked.

He told me that the aides were getting Mom into her pajamas when she got angry with them and quickly walked away before they could stop her. She walked toward the apartment door, apparently in an attempt to leave and “go home,” as my dad later put it.

Dad was watching television and saw Mom walk by wearing only her pajama top and her Depends as underwear, but no pants.

“Where are you going?” he asked, bewildered.

She didn't answer him. He said she stopped and looked like she was having a “spell” and then fell over backwards, hitting her head. He thought she had only hit her head on the carpet and told me that she didn't appear to be hurt, but the paramedics were taking her to the ER, just to be safe.

When I got to the ER, I found Mom on a gurney in the hallway, with Dad sitting beside her. I asked the receptionist, “Why is she in a hallway?”

“Oh, we're really busy tonight.”

Almost immediately, Dad told me that Mom had a fractured skull. He looked scared, like he was trying to process it. “I didn't think she was that hurt,” he said.

Soon, a doctor approached and informed me that Mom had been given a cat scan. She had a very long (several inches) fracture down the back of her skull and was bleeding from the brain. He said that if I wanted them to send her to Harborview for brain surgery, he would try, but he didn't think any brain surgeon would operate on a 91-year old woman.

“I'm not going to put her through that,” I said.

“Okay, well....we can try to keep her comfortable here for now,” he said. “We can take another cat scan in four hours and see if the bleeding has stopped.”

He suggested that Dad and I go home and that he would call as soon as they had done the second scan.

We left after midnight and I went to bed late, with the phone on top of me so I wouldn't miss the surgeon's call.

At 3:00 a.m., he called and said, “Your mom is doing great! Her second cat scan shows that the bleeding has stopped. I suggest that we hospitalize her for a day or so to watch her and keep her comfortable and then let her go home. I've seen people completely recover from these things.”

So, I hung up the phone and tried to get some rest, relieved and thankful.

Not even an hour later, a different doctor called and woke me from my sleep. “I'm calling about your mother,” he said. “Her breathing is in an 'end-of-life' pattern.”

I was completely confused. I tried to process what he was telling me. How could things have changed so rapidly?

I struggled to understand what he was telling me. “I don't understand,” I said. “Did she suddenly take a turn for the worse?”

“Yes. I don't think she will last until morning.”

I got up, and stumbled across the room towards my clothing. “I don't know what to do,” I said out loud.

My husband, who had overheard the doctor on speaker phone from his side of the bed said, “Call your brother.”

So, I immediately called my brother, who said he would drive up from Bellevue, an hour-and-a-half away. He said he would bring Dad.

I dressed quickly and ran out the door, driving to the hospital in a daze, praying that I would get there in time to be with Mom before she passed. I didn't want her to die alone.

When I got to the hospital and located her room on the second floor, I found her in a bed with no IVs, no pain relief, no fluids, just writhing and confused and pushing everyone away, trying to tear the hospital gown from her body.

I tried to calm her down and talk to her. I don't know if she knew who I was. She seemed to at times, then suddenly, she would push me away. The nurse in charge assigned a poor young nurse to sit with Mom until they could figure out what to do. We took turns trying to keep Mom from falling off the bed and tearing off her gown.

I asked the nurse if we could give Mom something for pain. From everything I've been told, a fractured skull produces a migraine from hell.

Later, the nurse came in to give Mom an injection of Ativan in the IV in her arm. I asked if that was for pain relief. “Not really,” she said. “It's to calm her down.”

“I think she needs fluids,” I said. “Can we give her IV fluids?”

It seemed to take an act of Congress to get fluids, but they eventually arrived an hour and a half later. I asked again for pain relief for Mom. She had both of those things in the ER...what was the matter with these people...why couldn't they take care of her the way the ER doctor had done?

Finally, the nurse came in and gave Mom morphine. Eventually, she calmed down and her breathing slowed.

I was working off of about an hour of sleep and stayed at the hospital 12 hours that day. I saw two different doctors and several nurses who came in and out. The last doctor I spoke to said that things were “50/50” as far as Mom surviving. He said we just needed to wait another 24 hours and see how she did.

I told him that my husband and I were supposed to fly to Ireland in two days. I told him that I needed to cancel everything. I'm not even sure why I told him, I just needed to say it out loud, I guess. All of my planning for the last six months was for naught.

Funny thing is, when I first learned that I had been accepted to the photography workshop in Ireland, I couldn't believe it. I told my daughter that I was afraid something bad would happen and that I wouldn't get to go...it just seemed like it was too good to be true. It was a bucket list item.

Why didn't I believe I would really go? Maybe I'm prophetic or maybe I'm a pessimist. Probably the latter.

After my 12-hour day at the hospital, I went home to get some rest. I didn't want to leave Mom, but I knew I needed to reboot. I fell asleep about 9:15. At 11:00 p.m., the phone rang with the hospital's number on Caller ID. I feared the worst.

It was the night nurse, calling to tell me that they had moved Mom to the third floor because she was more stable. I was relieved beyond belief. Maybe she would recover. Maybe Ireland was back on again.

But yesterday put all of my notions of normalcy to rest. The day was full of Mom groaning and vomiting. Her mouth filled with blood and she vomited it all over herself and the bed. I asked the nurse why she was vomiting blood. She couldn't give me an explanation, but she tried  her best. She reminded me of a third-grader trying to explain the rotation of the sun. She obviously didn't know, but whatever she said sounded good.

The nurses came in and out again and cleaned her up and moved her to her left side again. I couldn't get used to seeing her this way. The nurses left Mom with her lips bright red from dried blood and her teeth covered in dried blood. I got a wet paper towel and tried to wipe it off. Later, they sent someone in to swab her mouth. I sat by her and stroked her hair, but the truth is that I would often look away because it was unbearable. One side of her mouth drooped down and her eye on that side of her face was closed. Once in awhile, she would open it and I thought she was looking at me. I spoke to her to let her know I was there.

The truth is that I cried when I sat by my mom yesterday because I didn't see the face of a dying 91-year old woman. I saw the face from the photograph of her as a young girl. She looked exactly the same. The same features, the hair smoothed back in a ponytail. Even her skin looked smooth to me.

When I held her hand and scrutinized her face, I saw the face from her wedding photograph, one of only two that have survived from her wedding day. She was a beautiful woman, a Texas girl. She had beautiful brunette hair and flowers in her hair.

When I stroked her hair, I saw the smiling face from the photos of her holding me as a little girl, Mom all of 34 years old and wearing a red sweater.

When the aides and the doctors and the nurses came in, they saw a pitiful woman dying. I talked to them about who she was and the life she lived, so they would know her as someone more and maybe give her better care.

About an hour before I left the hospital yesterday, Mom stopped breathing. Only my dad and my husband were in the room with me. Dad said, “I think she's smiling at me.”

She wasn't smiling. She had suddenly closed her mouth and her face was turning blue. “I think she's turning blue,” I said in a panicked voice.

We gathered around her bed, not quite knowing what to do. We thought it might be the end. Suddenly, she opened her mouth and vomited green fluid all over herself and the bed. It looked like bile.

Distressed, I ran out of the room to get a nurse. I asked why she was vomiting like this.

Before we left the hospital yesterday, I spoke with the nurse and reiterated that we wanted Mom to have morphine whenever she needed it, over and above the morphine drip, if necessary. “Please check on her while we're gone,” I said. “I'm afraid she will vomit and aspirate it into her lungs when no one is there.”

I was assured they would check on her regularly. I felt horrible leaving her again. What if she dies while we're gone?

Two people yesterday told me separately that many people wait until their loved ones leave before they die. I don't know if it's true or not, but I Googled it and apparently, it's a common theme. It's as if many people don't want to put their loved ones through it, so they wait until it's safe to die.

Today, we visited Mom again. I felt guilty for sitting there talking about computers and Ireland and everything else. Her appearance wasn't as shocking. The nurses gave her anti-nausea drugs so she stopped vomiting. In fact, she stayed in the same position for hours while we were there, all the while struggling for every breath.

I felt like we were treating her like another piece of furniture in the room, going on about our business while she hovered between life and death next to us. I wanted to include her in the conversation, to let her know that she wasn't gone yet. I got up and moved to sit by her, stroke her hair, hold her hand, tell her I love her. I'm not ready to let her go, but I want her suffering to be relieved and yes, my suffering as well.

When I close my eyes, I see her face and her struggle for breath, for life. It's torture to witness.

I told God today that I wanted to entrust my mother, her life and her death, to Him. As much as I want to change things, to make them better, I cannot.

I want to trust, I want to believe. Lord, help my unbelief.

Tuesday
Oct112016

Turning 60

When asked my age, I'll admit it. To shave off years would change my life entirely. For which years would I eliminate?

Click to read more ...

Saturday
Aug302014

This is love

This last month has been difficult, as I watch my parents, both 88, contend with the ravages of time. I have long known how immensely blessed I am to still have both of them around. I've tried to prepare myself for the inevitability of losing them, but the thought of not having them here on this earth makes me want to run and hide.

Click to read more ...

Thursday
Jan022014

Growth lies at the edge of fear

I didn't expect to do another blog update until . . . who knows when. The best word to describe how I've been feeling over the last few months is "overwhelmed." If someone just looked at my life, my job duties and schedule, etc., they might think, "Why should you be overwhelmed?"

Click to read more ...

Friday
Oct112013

Today is my birthday (again!)

I've written on my blog exactly two times in the last year. Wow. That kind of astounds and saddens me. It's like an old friend who I have neglected.

Click to read more ...

Sunday
Apr072013

'The truth is, you don't control squat'

Above: A photo of me during the chemo phase of my treatment. My husband (the photographer) just said something to make me laugh.

Note: I wrote this blog entry months ago, but couldn't bring myself to post it. I kept thinking I would come back to it and revise it. I just re-read it today and realized that I really did write what I wanted to say. I'm not sure why I didn't post this earlier--maybe I was afraid of stepping on someone's toes or bringing down the wrath of people who like to feel empowered. Hey, I like to feel as empowered as the next person. But, for some reason, today is the day to post this.

I'm not out to burst anyone's bubble with this blog entry. Rather, I'm writing from a place that I've been struggling in for a long time. If you take the time to read the entry, please click the video link at the bottom as well. It is intended to be the capstone.

The title of my blog entry is taken from a quote by Ed Dobson, who was a “celebrity pastor with a large congregation and broad influence.” In 2001, Ed was diagnosed with ALS (Lou Gehrig's disease), a fatal illness that changed his life and ended his church leadership role. Doctors told Ed that he had two to five years to live. Despairing, Ed prepared to die.

Although I was not given the devastating news of an ALS diagnosis, I do know what it's like to be told that I have a terminal disease (although one could argue that we are all terminal, aren't we?). Although many people beat breast cancer, there are plenty who don't. The truth is that I am constantly aware that cancer could rear its ugly head again—and that I should enjoy every day I have been given as a reprieve.

I have pondered the idea of “control” a lot since my cancer diagnosis. I'm continually torn between the idea that I have some kind of control over my health with my lifestyle habits (eating, exercising, keeping stress levels down, etc.), and the gut-level feeling that I'm deluding myself and that any kind of control I have is all an illusion. In other words, it makes me feel better to think I'm in control, but that's about all it does.

See, I do believe that taking good care of myself helps me feel better. And I do believe that working hard in life pays dividends--usually. I believe all of that—and in apple pie, baseball, Chevrolet, and motherhood.

But I'm talking about real control. This was brought home to me in a very personal way in the last few months and, truthfully, is one of the reasons I've been struggling with depression. Someone quite close to me (a good friend from church), was diagnosed with cancer a year ago and she's gone now. If ever there was a person who believed in living a healthy lifestyle, it was her. She was one of the most energetic and hardest working people I've ever known. She was full of vim and vigor. And today, she's gone.

I have found that many people (including myself, in a former life), are prone to at least subconsciously “blame the victim,” chalking a cancer diagnosis up to some kind of unhealthy living or habit. I suppose the obvious reason we do this is to distance ourselves from the terrifying thought that something awful could happen to us as well. Yet, the truth is, many people have not done anything but eat well, exercise, breathe the same air as the rest of us, and they still get cancer—or some other terminal disease, anyway.

After my friend's cancer diagnosis, she doubled up her efforts to eat right and take good care of herself. When the doctors told her that the chemo wasn't doing its job, she visited an alternative cancer clinic where she was given herbal remedies and pursued a rigorous “healthy” regimen, being told that many people had been restored to health using the same treatment. But it was not to be.

I spoke to my friend two weeks before she died and I'll never forget what she said--probably because I identified so closely with her--“I never expected to die this young.”

Add this to another woman I know from the cancer support group I've attended. She was like the poster woman for cancer survivors. She beat breast cancer over 12 years ago and is fit, a healthy eater, upbeat, tan, optimistic—a veritable role model for all women who want to move past cancer. I happened to see her at a luncheon last summer and learned that her cancer had returned and that she had just undergone a double mastectomy. I tried not to let her experience get to me—after all, she's still a survivor—but I wondered, “Is that me in a few years?”

So, I've struggled with whether any of my efforts make any difference at all. And the truth is, I don't think so. I can't jog enough, pop enough vitamins, eat enough veggies, or donate enough money to deserve this life. Each day is given to me, not because I've done anything to earn it, but because of God's graciousness. The very beat of my heart is a gift from God.

I'm sorry to admit this, but when I see people so pleased with themselves for having their 401Ks buttoned up, their scale reflecting their desired weight, their pantries lined with all the right health foods and vitamins, their tanks filled with gas, and their clothes, hair, and make-up “just so,” it makes me want to scream.

I still have well-meaning people recommending books and emailing links to me—tips on how to extend my life. Apparently, getting a mammogram was my first mistake. Maybe it was; I'll never know.

But it makes me want to say, “Really? Really! You have it all figured out . . . you've happened upon just the right regimen that's guaranteed to allow you to live to what? 90? 100? Well, GOOD LUCK WITH THAT.” 'Cuz . . . you don't control squat. YOU'RE STILL TERMINAL.

The truth is, I'm envious of people who are all snug-as-a-bug-in-a-rug with their illusion of control. I'd like to go back to being deluded myself. It was much more comfortable to believe that life is secure with all my ducks in a row. Feeling in control feels good.

The first time I remember having my notion of control and stability challenged was when I went through a divorce that I didn't want. I thought that I had done things the way they were supposed to be done. What I didn't count on was another person's choice impacting my life in ways I didn't desire. I didn't want to be a divorcee, but it didn't matter—I became one whether I liked it or not.

The second time my illusion of security was challenged was when my husband and I lost our house through a failed business. I thought that God wouldn't let us lose our house (why I thought that is a whole other discussion, but suffice it to say that I no longer think this way). Despite our best efforts to work out a deal and keep our house, we lost it.

The third time my illusions were challenged was when we found out that we couldn't have any more children. I believed that God could do anything and that He could reverse the infertility diagnosis. But it didn't happen.

The fourth time I experienced cognitive dissonance over my security was September 11, 2001. I remember going to bed that night with the chilling thought that evil really did exist and that I was no different than any of those people who went to work that morning, expecting to have a routine day. If it could happen to them, it could happen to me. I remember laying in bed that night, gripping the covers around me, pondering the reality that evil lurked just outside my door. I did not want to think about it.

The idea of having any real control over my life keeps getting chiseled away. In 2008, after having a mammogram, I heard the words, “We found a solid mass.” I was told it needed to be biopsied. I remember saying to a friend, “I don't have time for this! I've got a lot on my plate right now.” And when my doctor told me, “You've got a year of extreme fatigue ahead of you,” I wanted to slit my wrists. Talk about having no control.

Now, before the hate mail starts pouring in, let me clarify something: I'm a big believer in free will. I believe that God gave us free will to make our own choices and, of course, control over our lives, control over things that—to me, anyway—are short-term. Like getting an education, creating a business, shaping the kinds of relationships you want to have, and whether or not you're an obese slob or a healthy, fit person. Yes, of course, I believe we have control over those things.

What I'm saying, however, is that those things only give us an illusion of control in the end.

Back to Ed Dobson, who is amazingly still alive after 10 years with ALS. Ed's story is being told through a video made by his son. The video tells of Ed's realization that “it ain't over 'til it's over.”

You may think that Ed's video would be depressing, but, it is just the opposite. Ed has found the secret to appreciating life in learning how to really appreciate living. If only we could all learn from his experience without having to live through it ourselves. Jesus said it best (paraphrasing), “He who loses his life will gain it.”

Ed Dobson points the way for the rest of us and, for me anyway, inspires me to learn from his experience. Ed Dobson tells it like it is: the truth is, you don't control squat.

ED'S STORY Series Trailer from Flannel Staff on Vimeo.

 

Save