Armoured Up

Continued from Another Goodbye

“For what is it to die but to stand naked in the wind and to melt into the sun? And when the earth shall claim your limbs, then shall you truly dance.”  ~ Kahil Gibran

It is difficult to describe the sensation, the emotions, of walking out of a hospital or facility with only a bag of personal effects. I’m not sure we are ever prepared to walk out of a building as a person so different than the one who walked in. I had done this twice now, first my husband and now my mother and while death is a part of life, how can we ever be ready to lose either? It doesn’t matter how old you are – we only ever get one mother and now mine was gone.

We all – including Abee – went back to the condo that I had rented for the week we were there. It was a surreal time for us as siblings too. The one thing that had bonded us at all through the debacle of my marital drama was mom. Now that she was gone, what would be the motivation for us to ever stay connected? I was hopeful that we could start over here – allow the bonds of family to be stronger than betrayal or deceit and reconnect. We sat together and cried when the feeling overcame us but mostly spoke about the woman that we all loved. We shared funny stories and discussed quirks that we admired. We eulogized her with our hearts that night in a way that would have had her blushing but feeling proud that her intent had been accomplished. There was no doubt that regardless of the differences we had as adults, this woman had five children who revered their mother passionately. I hoped to be so lucky.

The emotional roller coaster I rode while in San Diego was exhausting. There were times I took a break from being in the room to walk outside to enjoy the California sunshine. My instinct was to talk with Hubby because other than my siblings who were here with me, he was the next closest confidant – or had been. Because it was an ingrained habit, I called him to vent my sadness and heartache over the impending and eventual loss of mom. I must have talked to him two or three times a day just because it had been the pattern over that last fifteen years of my life. There was a strange sense of comfort in talking to him, perhaps the familiarity, perhaps the memories of a better time for us… I’m not sure exactly but my instinct dialed the phone and I felt better afterward so it kept happening.

The truly crazy part of this whole thing was that I wasn’t the only one… Abee apparently was doing the same thing. There were times that I would be talking to him and call waiting would beep in to let him know that she was also calling to talk. That week, it was somehow tolerable or perhaps it was that my brain couldn’t process more than one loss at a time, or that the idea of losing mom far exceeded the idea of losing Hubby. As I sit here and recall those moments of recognition that we were each using the same man for emotional support – in the same way – the absurdity of it is staggering to my brain, but that’s what we did. The three of us formed an interactive triangle that would have made the Kardashians raise their eyebrows.

Abee and our brother had early flights but the rest of us were on a red-eye and had the whole day to get through. We had a memorial lunch overlooking the Pacific in honor of mom and probably drank too many mimosa’s in her honor before we bought a dozen yellow roses (her favorite) to throw into the sea at the point in La Jolla. Just standing there, listening to the surf hit the rocks forged memories of mom onto our hearts as the ocean was one of her most identifying interests. She loved, loved the ocean. She was known to wrap herself in a blanket or two as to ward off a fifty-degree wind so she could sit on the Kitty Hawk dunes and read. It never mattered to her how cold or hot it was as long as there was an ocean breeze and she could hear the waves crashing against the sand. We stood there, three of her daughters in solidarity, celebrating not only the woman that birthed us but the woman that had championed for us more often than not, for most of our lives. Even in her faults, she was Mom and we were going to desperately miss her.

Concurrently with our experience, Grandad and mom’s own siblings were making funeral arrangements for Grandmom. The service was scheduled for the day we arrived back on the East Coast and there just wasn’t any way for us to arrive on the red-eye and then – in our own severe grief – make it to her service. The flight home was emotionally arduous as we considered the extent of our family’s losses. It was barely believable that within eight days of one another, they had both simply ceased to exist in live form. Upon landing, I picked up the car and drove us all home; dropping Emma off at mom’s house so she could be with her twin who had gotten back late – the night before. I walked into the house where my family was still sleeping and went into the basement bedroom where Hubby was bunking, took off all my clothes, and got into bed with him.

In that moment, the only thing I needed was comfort and in some undeniably disturbed way, he was the source of that solace. For just a while, the ugly distorted reality that existed in the space between us melted away and we came together one last time. Grief disrupts emotional reason. It didn’t last long however and after a brief nap, I returned to my senses. I unpacked my resistance and reaffirmed my destiny to personal dignity by talking with E. She offered to come rescue me from myself but I was pledging sanity and knew that my extended family was about to transition from one grief to another, which would be chaotic at best. It was better for her to reserve time and energy for when the bubble eventually broke and my reserve was again tested.

The armor I embraced was iron clad. I drove over to Mom’s house – now Abee’s – where people had begun to assemble and sat there deep in an easy chair with a blanket over my lap as I watched a parade of well-wishers and allies move in and out of the room. It was another one of those times, etched securely onto a memory plate, where pragmatism prevailed and reality emerged only superficially. No matter the intensity of emotions only months ago, it was shelved – set aside – with the most interesting intention – so that we could work together and plan what was to happen next.

Hubby came over once to bring our children and the amplitude of awkwardness was immeasurable. We all felt it – he felt it. He didn’t come back. I’m pretty sure that if he had, my brother would have lost his mind and so it was good that he had the kids to keep him busy. We planned a funeral, held in an old Victorian mansion (another love of hers) and made a photo video that brought most family members to immediate tears as they visualized many of the amazing memories they had shared. I was barely cognizant through her service as the grief drowned me but with the love of so many people who together – embodied her, we got through. As we always do.

When everyone had left and gone back to whence they came, I knew Abee would be alone. Of all of us, this was going to hit her the hardest. She was the only one of us without an immediate family to lift her up. I called – believing that we could start over – and invited her to the house or stated that I would go there to be with her.  “Thanks, ” she said, “I just need to be alone”.

I wasn’t yet understanding how self-destructive expectations can be.

Hi Mom

“I realized when you look at your mother, you are looking at the purest love you will ever know.” —Mitch Albom

Shortly after we moved into our new home my mom got sick. Well – in truth, she got ‘more’ sick. She had been diagnosed with Polycythemia Vera way back in 1975. It is a blood cancer – essentially the reverse of common Leukemia. PCV patients make too many RED blood cells. They suffer from migraines, enlarged livers, and spleens and back then, the first line treatment was to have a phlebotomy (withdrawal of blood) weekly. She was poked and prodded year after year for a long time. Initially, she was given only five years to live. I was a teenager, living 3000 miles away from her when the disease was discovered. Thankfully, it was during her Army days and so she qualified for military medical benefits throughout her lifetime (coincidence??)

Remember, mom left us when I was 12 to join the Army so that she could receive an education that might allow her to support her children as a single mom because she was leaving Dad. Essentially, from the age of 12, I had only lived with her for a year and a half, and all the rest of the time she was thousands of miles away. I missed her terribly. Even though my dad was great, a girl needs her mom. It wasn’t until Rocky left the Navy and we moved to Virginia that I got to know my mom as an adult. It had been almost ten years of a very sporadic relationship – only talking once a week on average as long distance telephone calls were still very expensive and even though I got to see her once per year – our relationship was somewhat superficial at best. I was always afraid that she was going to die before I got to know her well.  When I was acting in high school and asked to cry, I would just think about losing my mother.

The doctors had been able to manage the disease relatively well. In fact, it had gone into remission completely while she was pregnant with the twins but then a few years later – in early 80’s, it came back and she was again relegated to constant phlebotomies, constant fear of blood clotting, and extreme fatigue. She was a candidate for a trial drug back then and was treated at Walter Reed Medical Center with P32 – a radioactive agent that affected the way blood marrow produced red blood cells. It worked. She went into remission again for a few years. My goal in living close when we got the opportunity was to know her – finally share my life with her. I am glad we made that choice as she was a rock for me when Rocky died and I was able to experience some of the ‘emotional care’ that had been absent for me as a teen.

We had grown extremely close. She loved Francis as if he had been her son. I often think about the narrow gap of just 20 years between us and recall how she was at my age. The twins were only seven years older than Francis so it was as if we were raising our children together – and yet she was my mom too. We were different in a lot of ways. She was always telling me to lower my voice… “I’m right here” she would say. I was taught to project my voice as a stage actor and mom was always telling me to soften it.  I sometimes hear her say it today as I get passionate and loud. She was a ‘look past the garbage’ kind of gal and I am a ‘throw that shit out’ kind of woman. She was a ‘just do it’ lady and I always asked ‘why’ before I could start. She taught me what it meant to ‘have someone’s back’. She was a great friend to me.

We got used to her disease. She stayed in ‘maintenance’ mode for so long that we often forgot she had something wrong with her. She received a second round of P32 in the early 1990’s and again, it worked. Other than fatigue and a calendar full of doctor’s appointments, she led a normal life. She loved playing bridge and crafting. She was good at a lot of things and then there were things that completely escaped her. She was so directionally challenged that she would get lost coming home from the grocery store. GPS systems came out entirely too late to save her. We forgot that she might die from her disease.

In early 2001 she was sick again and the VA determined that she had developed Myelofibrosis (a bone marrow cancer) secondary to the PCV.  It was apparently expected at some point – a natural progression of the disease – but people failed to prepare us for the reality of that promise. The VA essentially sent her home to die stating that there was nothing more they could offer her. I wasn’t having it. The internet came to my rescue and as I honed my research skills, I decided it was a good idea for her to return to Walter Reed Medical Center where she had been used as a Guinea Pig to see what new treatments they may be in a position to offer. I lived much closer to the DC area so mom and my step-dad came to stay with us for a few days.

I will admit to feeling a bit entitled and behaving in a brash manner but I lied and told my parents I had gotten an appointment. In fact, we didn’t have an appointment but simply presented ourselves to the Hematology department as if we did and asked to see a doctor. I explained that she was one of the original P32 patients – still living – and needing follow-up care. My step-father – an Army lifer – was pretty mad at me and extremely embarrassed but, we got an appointment with one of their Hematologists the next day, which was good because I wasn’t leaving without one – I was definitely feeling confident. The doctor who began to care for her was an angel. She tolerated me with respect and treated mom with incredible care. She was completely and totally committed to finding solutions to mom’s health challenges.

I found some active research at the Mayo Clinic and presented it to the doctor who accepted it with pleasure. Indeed, she contacted the researching physician and was able to enroll mom in that trial via WRMC. It was a win all around! The best part was that mom had to come to stay with us for a week each month. After a few months of traveling and receiving medical care, it was apparent that it would be in their best interest to relocate. I couldn’t be happier! I was going to be able to share my life with mom; share my children. I was elated that my family could come to know the lady that I so dearly loved. I couldn’t have been more enthused to having her close by – all the time. I found a great rental for them within a few miles of our house and we moved them in before the end of the year.

Once again mom was getting a new lease on life and I would get to share it with her.