Living Through Reality

My post yesterday was about gratitude, and also joy.

Today my post is about the days when I can’t seem to dig deep enough to find the gratitude I know is within me.  When I’m in so much pain, my mind is so muddled and my heart is so sore that I don’t know if I can — or if I want to — make it through another day.

In 2017 the USA had the highest suicide rate in 28 years.  It’s a fraught time for many of us, socially and politically.  Even folks who are agnostic politically can’t help but feel the blowback of their more passionate friends.

About 8 years ago I had a brush with suicide while on a drug, Lyrica, which caused suicidal thoughts and actions.  I haven’t seen that drug advertised much lately, I wonder if the I-have-no-pain-but-I-want-to-die issue is the reason.

After such a rough year, and especially after the loss of a life partner, it’s not unusual for folks to begin growing weary of life, fearing a lonely future, seeking an escape.  I’m not in that group; my two young-adult kids are reason enough for me to want to hang around and annoy help them through the next phase of their lives.  As I wrote yesterday, my life is pretty great, for what it is.

I do feel alone quite often, but that’s a function of my recovery.  It’s hard to get out and socialize; moving is painful, I get so tired, and being in a crowd (even in a restaurant) seems to unsettle me in a new way.  I don’t know if it’s because for 18 months I’ve essentially lived most of my life in a hospital room, a bedroom or my living room, but my Living with Loss group at Gilda’s Club (6-10 people) is about as large a group of people that I feel comfortable interacting with.

I see a therapist regularly, I interact with folks online through social media and my blog, and I have friends drop by on a fairly regular basis.  I am very lucky.

There are folks, though, who don’t have the resources I have.  They’re alone, they’re ill, but they can’t find their way to a path toward human connection.  You might know someone like this; a relative, a neighbor, a friend’s mom, who is living a life with little human interaction.

Once I was on a bus in NYC on my way to an appointment, and we passed a church bulletin board which read, “WE ARE ALL ONE”

Coming home a few hours later I saw that one of the letters had fallen off, and now the sign read, effectively, “WE ARE AL ONE”

If you have the resources and opportunity to help someone in your life, do it.  Help them figure out how to receive and send email, set them up with a protected facebook account so you can check in with them, ask them if you can take them out for coffee every now and then.

If there’s no one in your life like that, check out organizations like the ones below which can provide a structure to allow you to help someone whose life may —quite literally— depend on a kind word or a visit.  As the recipient of SO much love this past year, I can tell you what a difference it makes when you feel that folks really care how your day is, or if you’re feeling overwhelmed with life.

The list below is from the Prefer Home Website.  There may be other organizations in your area that aren’t listed here, but it’s a starting point.  Ironically, just before I was diagnosed I had applied to deliver food through Meals On Wheels here in St. Paul.  Of course, with the cancer and my continuing difficulties walking, this isn’t possible anymore.

The journey from active life participant to person needing help and company can be very short, I’m proof of that.  Pay a bit of love forward and reach out to help someone who may be feeling a tiny bit neglected emotionally in your community.

We don’t know what tomorrow will bring, but it never hurts to help tip the scales of Karma when possible!

10 Charities For Older Persons

1. Honor Flight Network: flights for veterans

As a thank you to those who served, The Honor Flight Network takes veterans on free trips to Washington, D.C. Currently, they focus on escorting World War II veterans to the memorial created for them. The program also takes veterans who are terminally ill.

2. Meals on Wheels Association of America: nutritious meals

Local programs provide congregate meals (at places like senior centers) or deliver meals to homes. Some programs also distribute food for homebound seniors’ pets.

3. Independent Transportation Network: rides

A network of affiliates provides what the charity calls “door-to-door, arm-through-arm service” to people who are generally 60 and older. Adult children can even volunteer as drivers and store up transportation credits for their parents. Gift certificates are also available. The rides aren’t free, but there is a program to help low-income seniors pay for them.

4. SeniorNet: computer training

Volunteers teach seniors to use computers. Classes include “Internet and E-mail” and ”Buying and Selling on eBay.” There are also discounts on computer-related products.

5. Second Wind Dreams: dream granting

This charity grants dreams for people living in long-term care communities, such as nursing homes, assisted living communities and hospice facilities. The dreams range from simple ones like a dress for church to big ones like reuniting with family members or swimming with dolphins. Donors can choose the dreams they want to sponsor.

6. Oasis: active living

Oasis helps people 50 and older keep their minds, bodies and social lives active through a variety of programs. Some are intergenerational, such as the tutoring program in which volunteers help kids learn to read.

7. Alzheimer’s Association: support and education

If you have a disease, there’s probably a charity for it. The Alzheimer’s Association is one example. This large charity is involved in advocacy and research support. But it also offers a number of programs that directly help patients and families, including a helpline, support groups, education programs, and safety services for people who wander. The association also helps people find clinical trials.

8. Alzheimer’s Foundation of America: support and education

Not to be left out when talking about Alzheimer’s charities, this one offers a hotline, educational workshops and free memory screenings. It also provides services for people with dementia, such as intellectual stimulation programs and adult day services, along with respite care to give their caregivers a break.

9. The Pets for the Elderly Foundation: pet adoption

Pets can help combat loneliness, so this charity helps people 60 and older pay pet-adoption fees at participating shelters in 29 states.

10. Socks for Seniors: holiday gifts

This is a fun one for the holidays. Elderly people who are living alone, living in nursing homes or homeless get a visit from a cheerful volunteer and a new pair of socks—often bright, festive ones. The point is to let them know they’re not forgotten during what can be a depressing time of year.

To find more charities, or to evaluate these, here are three helpful websites: Charity Navigator, GuideStar and Independent Charities of America. And to check for benefits you or an elderly loved one may be eligible for, visit BenefitsCheckUp.org.

Grateful Every Day

To say this has been the hardest, perhaps worst, year of my life is an incontestable truth.

I’m still dealing with the pain and exhaustion of my disease, and with that comes fear (of relapse, future mobility, everything else!)

But in the middle of the discomfort and anxiety is a profound sense of gratitude.  Some days I feel it more than others, every day I struggle to make it stronger, but it’s always there.

No, I don’t have Gerry, but I HAD him.  I was so lucky to have 25 years with him.

No, I’m not perfectly healthy, but I GOT THROUGH Lymphoma and Severe Sepsis, and lived.

I’m certainly not rich, but I have all that I need, and a bit more.

Every day I wake up to a full pantry, hot running water, entertainment, and so much love.  I am, in all seriousness, one of the most fortunate folks I know.

And this weekend I’m even luckier, still!

Andy has been dating Evan for 9 months.  Evan’s dad and I are friends from college (crazy coincidence), his mom is a delight, and we’ve had lunch a few times, so we decided to do Thanksgiving all together in Wisconsin at a cabin deep in the woods this year.

We’re buckling down because a ‘once-in-a-decade’ storm is supposed to be coming, although at this point it’s six hours late (and it will probably be angrier for waiting…)  One friend is writing, his wife is making Swedish pancakes and the kids are organizing a board game for later in the day.

The dogs (3!) are generally pretty happy with each other, doing doggie things, and the lake is 5 different colors of grey.  I’m about to put the fire on with a flick of the wrist, and I contend that I’m the luckiest person in the world today.

Acclimation

This year has been a long journey of learning to acclimate myself to a new – everything – it feels like some days.

Recently I was in a group where we were asked to describe ourselves using a series of adjectives.  It was a confusing exercise, and at first no one did very well with it, but as it went along more and more people understood the situation and got into the spirit.

I identified myself as a woman who is a certain age, is a widow, a reader, and is disabled.  It was only after the exercise was over that I realized that I hadn’t used two adjectives which would have been at the top of my list a year ago: knitter/designer and cyclist.  And there’s that new, intensely painful adjective: widow.

It’s weird how upsetting I found all of this, as if over the past year I’d lost my identity in some way.  Reader?  Well, yes, I read, but I’m much more of a knitter or cyclist, right?  I tried to explain it to Andy, but I didn’t do a great job.  Essentially, I felt that I’d had a huge part of my personality removed, and I guess I have.

I have to admit to myself that I haven’t ridden my bike in any meaningful way in over a year, and although I DO knit, it’s not with the same passion and intensity I’d had even last year.  I may be a cyclist/knitter in the same way I was again, but right now I’m just a reader, which is fine.  I just can’t seem to muster up the same passion for my knitting, and that’s due in part to my physical limitations; it’s hard for me to sit in a position conducive to knitting for more than an hour or so.

However, I will be a widow for, well, probably forever.  Which is fine, I’m not seeking to change that status any time soon.  It’s a new adjective, a new label, and I have to get used to it.

Scary Week Ahead

A few weeks ago my doctor wanted to try to reduce the pain meds I’m on, we’ve done that every few months, but this time was different for two reasons: He wanted to ENTIRELY remove my evening pain meds (replaced, if necessary, with ‘breakthrough pain’ oxycodone), and he was (unknown to me) going to be out of town for 2 weeks.

I had some major problems with the medicine cut-back so the nurse in my doctor’s office adjusted my dosage, and when my doc returned he decided to just return to what I’d been taking originally, yay!

Except it was a really rough two weeks.

It was hard to get by with minimal pain relief, I couldn’t sleep and that led to daily exhaustion, which led to more pain, and soon I was in a vicious spiral that took me almost two weeks to halt and reverse.  I don’t think my doc anticipated how difficult this medicine changeover would be, I hope he carries this new knowledge with him when dealing with future patients.

I had felt like I was making some great strides before the medicine change up.  Those were put on hold, but I’m working hard to increase my stamina again.  This week I attended a full day kick-off event for my Americorp job, and was very happy to get through it.  I paid the next day in exhaustion and soreness, but I got through it!

This coming week I have three days of training for Americorp, and I’m pretty scared about it.  Tues, Wed & Thurs I need to be at the Minneapolis Convention Center at 7:30am and stay until 4:30pm. I’ve spoken about my fears to the director of our local program, he assured me that if I’m unable to stay the full day they can work around that.

Then on Saturday my cookies are due to the State Fair Creative Events building.  I want to decorate them by Thursday so the royal icing is dry and hard enough to transport on Sat. That means each day at the end of my Americorp training I’ll be doing a bit of decorating (I like to do it over a few days to build up the icing)

It’s going to be a long week, but I’m not doing anything that I haven’t ASKED to do!  And I have a strategy to step back from either obligation if I feel I need to.  This week I’ll be taking my walker, that will make the day easier!  (Especially since the handicapped parking spaces are usually so far away from whatever event I’m going to!)

I feel certain that when my job actually begins, when I’m actually AT the elementary school, the days will be shorter and much easier than these training days will be.  Who knows?  By that time I may be riding my bike the 7 blocks to the school every day, wouldn’t THAT be a kick in the walker!

Missing In Action

It’s been a very emotional week for me, not least because my doc has had me cut back on my Oxycontin to half of my previous dose, although I also have 5mg Oxycondone I can take for breakthrough pain.  I’ve done this step-down twice already since ending chemo, and I agree that it’s necessary to reevaluate every now and then to make certain I’m taking the minimum I need.

But I think right now I’m below the minimum amount.

Max & Gerry on a tour of Gustavus Adolphus

I’m exhausted from not sleeping, sleeping’s been difficult because there’s so much pain.  The 5mg doesn’t seem to address the pain as well as the 20mg does (duh) and the extra relief I get from medical marijuana just isn’t cutting it.  It’s been a hard week, and emotionally, I’m feeling very drained and not terribly resilient.

Since visiting my friends last weekend I’ve been missing Gerry like crazy.  I’m sure it was going to place where we’d gone many times, and hearing him talked about with so much love by Myrna and Bob.  Bob said Gerry had one of the best political minds, and humor minds, he met.  That is such a lovely compliment, because I know how much Gerry would have enjoyed it.  He was the funniest man I ever knew.  And he loved politics.

It’s almost as if my mind put off mourning Gerry full out until I got far enough past my “clean” CT Scan so that I had enough ‘worry space’ in my brain to handle it.  There’s only so much one can worry about at one time, right?

After Gerry died in October I was in shock for quite a long time.  Then just when I was beginning to wrap my mind around the fact he wouldn’t be coming home, I was hit with severe sepsis and was put in the ICU until they figured out it was my port that had become infected.  I know I was closer to death during that week than I’d ever been, and to be honest there were times that week when I wanted to say, “Screw it.”

But I couldn’t, because I have two kids, and because I just couldn’t.  For better or for worse my body fought hard, even if my mind and heart weren’t in the battle.

Today Max was walking around “wearing” Kitty Nitro around his neck, looking for all the world like a taller, thinner, MORE bearded version of his dad.

Game Of Alones

.I’ve done a lot of things alone in the past six months, since losing Gerry.

I eat most of my meals alone, in my room, since stairs remain so difficult.  I sleep alone, I am learning to walk again, alone.

Andy is with me quite a bit, but, as a percentage of my days, I see very few folks on a regular basis.

And, of course, I never see the one person I really want to see,
and won’t ever see him again.

I miss Gerry.  It seems painfully obvious to write that, but it’s the strongest thread in this difficult year; I miss Gerry.

I miss walking, I miss good health, I miss the ease of my previous life, I miss cycling, but most of all I miss Gerry.

I miss having someone around who would know, intimately, the pain that I’m feeling in my back (he had several crushed vertebrae from his Myeloma.)

I miss Gerry’s fastidiousness, the house seems shabby and in an odd state of disrepair since he’s been gone.  Andy lacks the time and energy and I am not physically able to keep things as nice as they used to be.

I miss Gerry’s humor, although I swear that I hear his laughter many times throughout the day.  We’d become such a comedy “duo” over our 25 years of marriage that I can almost write his jokes for him, in my mind, when the opportunity arises.

I miss his hugs.  He was small, but strong, and I miss him surprising me with a hug from behind while I’m reading or writing or just sitting outside.

It feels so weird, though, that the times I’ve missed him MOST since his passing have been while watching this final season of Game Of Thrones.

In our modern world, one of the activities that brings couples together is watching a favorite show.  Gerry and I both loved television, unashamedly, but we didn’t agree on every show (of course!)

One show we absolutely loved was The Americans.  We would save up episode and watch them together on Roku, for hours at a time, binging, and we’d love it.

I feel a special note of gratitude to The Americans for closing the show so beautifully,
and doing it in time for Gerry to appreciate the ending.

Game Of Thrones, though, is continuing on, sans Gerry, through it’s last season.

Gerry and I loved GOT.  We loved the plot twists, the bizarre theories, the wild fans and all of the videos.  Gerry especially loved listening to one YouTube channel with amazing theories (most proved correct!) while he was puttering around in the kitchen, his domain.

Sometimes I think I can hear him in there, making a grilled cheese sandwich,
but alas it’s the cat doing something catlike.

I put off watching Game Of Thrones this season until plot reveals on Facebook made me chose between tuning in, or having the season spoiled.  I didn’t want to watch alone, but I didn’t want to watch with anyone else.  So I watched, alone

It’s a good season of GOT, Gerry would have loved it.  I’m loving it.  It seems a lovely farewell to a beloved TV series; I wish I had had time to give Gerry the same kind of farewell.  I still wake up in a cold sweat from dreams about Gerry dying with no one around him but medical staff, no family, no me.  I was functionally immobile from my reaction to strong chemo, but that doesn’t lessen my guilt at not being WITH him at the end.  Just because you know something’s out of your control doesn’t necessarily lessen the guilt.

Neither of the kids are into the show, and I hate to drag Andy into the final season just so I’m not watching alone.  Besides, it’s cathartic in a way that nothing else has been, to watch – and cry – and watch.  Sleep is so much a part of my recovery that I’m usually snoring by 8:30pm, which means I catch up on GOT on Mondays.

I feel less alone watching the show during the day, although in this insanely
dark season I have to close the curtains or I can’t actually SEE anything!

So every Monday during the GOT season here I am, curtains drawn and iPad glowing, weeping, missing Gerry, loving the show, finding a way to deal with widowhood.