A Chronic Voice December 2018

Once more, I am participating in A Chronic Voice’s monthly linkup. 

Prompts: De-Stressing, Savouring, Simplifying, Resting, Finalising

I often spend late November and much of December focused on finding the positives.  I struggle to connect with the joy and giving that are often assumed and expected, while I try to participate in celebrations and keep sadness and depression at bay.  I usually succeed now, but it has been a struggle since 2003, when my father died shortly before Thanksgiving.

Losing my father for Thanksgiving

My father officially died on November 23, 2003.  The fall that killed him occurred shortly after noon the day before – it just takes a while to confirm brain death.  

We spent the time before Thanksgiving that year finalizing his funeral plans – the viewings were the Tuesday before Thanksgiving and his actual funeral was on Thanksgiving eve.  

The contrast was intense – the altar was decorated with squash and other fruits of the harvest, while the church was full of mourners in dark colors.  

The Thanksgiving service at the church literally occurred an hour after dad’s funeral.  

Our Thanksgivings had usually been just the five of us, with Dad cooking the turkey, often starting it early in the morning with my sisters’ assistance.  His stuffing was delicious – both inside and outside of the bird. My mom would make her special cranberry sauce, and the house would be filled the the smells of Thanksgiving.  

The day would be spent together, listening to music and preparing the food. Sometimes we’d have a guest or two to join us, which we’d eagerly anticipate since the celebration was ‘official’ upon their arrival.

The year my father died, my mother, sisters and I spent Thanksgiving morning surrounded by my father’s family – the first and only time we had Thanksgiving with them.  

We ate the turkey that Dad had picked up the day before he died(family friends prepared it for us), and just eating seemed like all we could do.  

Each time somebody left, we’d return to the table and have another round – all at a loss for words.

Losing dad, especially in such a sudden and unexpected way, left us survivors in a state of shock and grief that persisted for years.  

Feeling the loss on Christmas

When somebody dies, time works strangely.  Minutes can feel like hours, but days and weeks can pass quickly.  

Our first Christmas without Dad was a sad affair.  Finding gifts for one another was challenging, but we each had two stockings as an attempt to compensate.   

It was just the four of us for Christmas, dad’s absence loomed over the event.  It was hard to summon the energy to do more than go through the motions. Everything we did just reinforced that there were only four of us celebrating this year, not our usual five.  

Holiday blues

Now, fifteen years later, my life is very different, but that loss still hits me, hard.  Sometimes it feels like the entire season is tainted with the memories of that year – that feeling of loss and separation.  

On top of the regular grief process, I lost my father the same year that I was diagnosed with Functional Neurological Disorder(FND) – that condition is often associated with emotional trauma, and in my case the connections are obvious and undeniable.

In other words, I have a history of depression(I was first diagnosed at the age of 9), which likely contributed to my developing FND(many people with FND have a history with mental illness) – and my symptoms were diagnosed in July of 2003.

Then, four months later, while I was still wrapping my mind around my diagnosis, I lost my father!

Death has always been the primary trigger for my depression – both my initial bouts and many of my relapses since then.

This was a fresh and painful traumatic death when my brain was already expressing my stress in a dysfunctional way with my FND symptoms.

It makes sense that I’m more apt to feel low around the holidays. I often have trouble being and staying motivated.  

I also am very aware of my depressive tendencies, and my sensitivity this time of year – and I have also put a lot of emotional work into creating and maintaining a positive frame of mind – so I just need to focus on actively reframing things for myself over the holiday.

I find that while I’m busy, I’m usually pretty happy, but in between events I find it harder than usual to maintain my happiness.  Knowing this, I focus on keeping myself consistently in a state of anticipation – framing my plans around anticipating events and recuperating from events instead of downtime alone.

Thanksgiving celebration, 15 years later

I do try to savor the time with my family.  Thanksgiving turkey is now baked by my mother’s husband, but we have all the food elements from Thanksgiving with dad – including his stuffing recipe!  

There are more of us around the table, usually – Mom and her husband, Al and I, and my sister and her wife – our other sister now has created Thanksgiving traditions with her husband and children, so we often don’t see them that day.  

Occasionally things get changed up, and mom and her husband add in or visit his daughter and her husband. One year, we actually had Al’s parents join us as well!

Christmas now

Christmas celebrations are now with a much-expanded family – my mother’s husband(whose wife had died as a result of brain cancer a few years after we lost dad) has two adult children, so there are a lot of us gathered in celebration!  

We have adjusted our Christmas traditions to blend in his family’s traditions – but they all were built around extending the family time together.

Both families had a tradition of doing things one person at a time, one item at a time, announcing our presents(and stocking contents), one by one.

We have been thinking through simplifying the processes since celebrations with a family of four or five is very different from celebrating as a family of 16!  

Stockings, rather than presents, are now central to our celebration.

Christmas with my family is literally an all-day affair, this year one of my sisters(wisely) decided that she and her husband running around with all four children was too much, and so they requested that we come to them. It worked great!

Mom and her husband spent about an hour with the family, watching the kids open presents, hearing the kids share their great Christmas moments they’d already had – Al and I came by after that, and had our time with the family, which was lovely – hot chocolate and bagels and presents and stories!

The other set of grandparents came by for the last hour – and Al and I rejoined my mother and her husband to continue celebrating the holiday.

Celebrating despite disabilities!

Resting is actually built into our Christmas celebration – I am not the most disabled member of my family as both my sister and my step-brother are living with brain injuries.

My sister takes multiple rest breaks during the day, and usually arrives at my mother’s a day or two early, giving her a chance to de-stress from the two-hour drive she and her wife take up to mom’s.  

Unfortunately, this year she was also managing pet health issues – so she and her wife came up a few days before Christmas to spend a day doing cookies with the nieces and nephews, then returned home to take care of their rabbits. They came back up around 1 on Christmas to do snacks, stockings, and dinner.

My step-brother is more severely affected in different ways – he now constantly uses a wheelchair due to balance issues, has some limitations in his thoughts, memory, and speech, has an aide with him to assist with many of his ADLs, and stays in an accessible room at a nearby hotel!

The focus with him is making sure he gets enough rest before coming over, participates as much as he can in the day, and then that he and his aide get safely back to the hotel after dinner.  

We usually have brunch and dinner at mom’s, and when the activity ebbs, my sister takes a nap, or some of us go for a walk, or do little things to break up the eating and stockings and presents.  One of our simplifications is that we rarely give presents among the adults now, but instead focus on stocking stuffers and games.  

This year, my mother tried to simplify more by going out for dinner instead of preparing it – so our celebration at mom’s was built around a late brunch, opening stocking, and then going out for dinner. My sister ended up being too fatigued to come to dinner, so napped while we went out.

My stepbrother had a hard time keeping his head up at dinner, but got a second wind and enjoyed dessert and a game back at the house before he and his aide returned to the hotel.

Al and I were out of our house for 13 hours or so altogether, and are still recouperating from the intensive family time – but agree it was well worth it!

Al’s family celebrates on Christmas Eve, so we feel incredibly lucky to be able to fully participate in both of our families’ celebrations.  

Preparing for our Christmas marathon

We take things as easy as we can during the day of Christmas Eve, and try to have our shopping done before the 23rd and our wrapping completed before we go to bed that night.  

We use our destressing techniques – Al uses video games to escape day to day worries, and I will play games on my computer or read to relax.  

I make sure to do some meditation earlier in the day, so I can enjoy myself in the evening. When possible, I take a nap in the afternoon, knowing I’ll be up late and short on sleep into Christmas.

Celebrating with Al’s family

We go to Al’s sister’s for dinner on Christmas eve, and her kids open presents after dinner. Once the kids are sent to bed, we go to Al’s parents house where the rest of us stay up talking, drinking, and listening to music until we open presents at midnight!  

We hang out there, relaxing, until we get too tired and head home – though part of that decision is sometimes related to how early we need to be at my mom’s the next day!

Al is a night owl and so this year we didn’t actually get home until around 4 AM!

We still managed to get up around 9:30 and to my sister’s before 11 to celebrate Christmas with them – Al doesn’t drink and is the driver, so it’s mainly about getting enough sleep that he feels comfortable driving.

The gift of being present for the holidays

Both celebrations are relatively low key once we’re there and focus on simply being present for a long time, so while it is a little bit of an endurance test, we enjoy the time!  

With Al’s family, we’re mostly eating and later listening to music(mostly in Spanish) – with bits of conversation in between. And of course, enjoying watching the kids open their presents!

With my family, there’s a bit of catching up, but it’s again about eating good things while interacting about the stockings, playing off one another a bit. We have some holiday music in the background sometimes, but will go long stretches without so my sister isn’t overwhelmed by the sounds and can participate longer.

Both families are familiar with my movement symptoms and know that they just happen sometimes and aren’t something to worry about.

 Our families also understand about Al’s chronic pain, and make sure that he is comfortable, as well as being understanding when he needs to shift and move around.

I relax into the family time, and savor the comfort of being in a safe place with loving people who accept me for who I am, and don’t try to change me.

I do feel very blessed to be so loved and cared for, and to have Al and I primarily worrying about getting the time with both families!  

For both Al and myself, part of the expression of love is spending time together, and both of our families also express their love on the holidays through sharing good times and good food!