Wild Boy and Fatigue

Before heading into this post, I want to express my gratitude to Geoff Schackmann who got this blog set up for me and has now done the work to turn it into a newsletter. If you would like to be notified when I post updates, hit “subscribe.” My heart is mushy thankful for those who read. I feel your love.

Sending my love to all,

Kalah

 

~

 

 

When attempting to write a blog post for the last week, anxiety and self-doubt blocked any topic I addressed. Shaking, thought streams were clogged and dammed (damned, truthfully) by the anxiety and self-doubts, so I hung my head and closed the computer, day after day.

 

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When I received my wheelchair in April of 2017, I asked for home physical therapy and occupational therapy. A few visits in, the OT left a list of things to keep in mind, which included ways MS presented fatigue. Among the descriptions of how fatigue shows: sadness and anxiety or panic.

 

Check and check. Almost daily.

 

Also, since 2017, I’ve been artificially awake with the help of amphetamines. Even then, amphetamines don’t completely cut the fatigue. Still, I am very grateful for being given a boost so I’m better able to engage with the world. I’ve just now realized how I forget my sadness and anxiety wait just underneath.

 

How do I make friends with all that? I know it’s possible because from my opening paragraph, to the story of my occupational therapist in the next paragraph, I felt a wash of relief. My anxiety and sadness are not of my making and do not reflect on the type of person I am.

 

Yes, anxiety has lived in me most of my life, and even that is not a character assessment. Self-doubt is a mental construct that I used as an answer to human emotions that I did not like.

 

~

 

When I was a pre-teen camp junior counselor, around age 13, there was a boy wreaking havoc every minute of the day. He was wild and feral-like, refusing to sit still except long enough to cram food in his mouth at mealtime. And he was screaming disruptively if he wasn’t moving.

As the first afternoon was heading into evening, a main counselor approached me to ask if I would be his, “guardian,” for the duration of the camp or until he was willing to calm down. The pre-teen camp went from Sunday to Friday and his mother was long gone.

 

I clenched my teeth with the frustration of my week being hijacked as I smiled and said yes. I wish I knew where he is today so I could get permission to use his name. Instead, I’ll call him Wild Boy.

 

Wild Boy was brought to me kicking and screaming, as though he was being taken to a torture chamber. “Yeah buddy, that’s how I feel, too,” I thought. I took his hand and held it pinned to my side with all the tender strength I could muster. Otherwise, he would have taken both of us to the ground. I recommended he get used to it because this was where he would spend his week, pinned to my side.

By Monday afternoon Wild Boy was calming down.

 

Wild Boy began to calm down, but efforts to work him back into any camp participation reopened his panic gates. Finally, I assured him he did not have to take that leap until he was ready. By Tuesday we were a devoted power team.

 

That week with Wild Boy was one of the most valuable lessons and treasured memories in that era of my life.

 

~

 

When I befriend my own version of Wild Boy, I now can remember the original Wild boy. This amplifies the value of hanging out with the segments of my life I initially try to exile. When I befriend my inner shrieks of self-doubt because of anxiety or fear, I become a more powerful version of myself.

 

 

 

 

 

To Palliative Care or Not Palliative Care

If you’re breathing, there is more right with you than there is wrong with you, even if you have only one day left to live.

– Jon Kabat-Zinn

 

 

 

 

 

 

I did not qualify for palliative care. But Thursday’s appointment with the palliative care nurse was amazing. He stayed for two hours — nurse Mike, a kind and gentle human..

 

He first open the conversation by saying, “I need to make full disclosure here, palliative care usually steps in when a person has only 1 to 2 years left to live.”  

 

Pausing for a minute and with a curious scrunch on my face, I shook my head and said, “I can’t imagine being alive in two years.”

 

“With a feeding tube you could live 6 to 10 more years.” He paused and stumbled a little bit and said something close to, “10 years might be a stretch.” I laughed.

 

I told him that hospice was my happy place and I’m not afraid of it. I just want to know the facts and not have the medical world skirting the issue. He offered an appreciative sigh and then a chuckle while he nodded in understanding.

 

“The medical world does not like to talk about death.” Mike offered.

 

I had forgotten that fact and was grateful for his reminder. “Yeah. They’re here to make things better, and I get it. But I really would like somebody just to tell me what it looks like while MS devours this body and what the likely timeline is. That would comfort me.” 

 

But I was also feeling an odd and new happy dance that I might get to see my first grandchild, who is due to arrive May 8, when she goes to kindergarten! The picture of seeing that changed everything!

 

Yeup. It’s true.

 

 

 

~

 

I’m going to be a grandma.

 

There are not enough exclamation points or emoji’s to express how big this is for me, having this lovely and mysterious creature – who is beyond description, – bring this baby into our family with Geoff.

 

Welcome to the family, Liz!

 

~

 

 

 

With grandchildren and being involved in their lives, watching my beloved boys (and my beloved extra-kids I will forever hold as family) build their beautiful lives, as visions dancing in my head, I headed into the discussion with Mike with a new light shining in my heart.

 

We discussed the topic of feeding tubes and how I felt about the way my medical team was handling things (or not). When he asked If I would consider making an appointment with my G.I. doctor, I got weepy. I said, “there’s so much emotion in this for me I don’t think I would be clear in my communication with the doctor.  Also, I might not ask the important questions and just go through the process, shaking. For me, that is not okay, and I would not advocate well for myself.”

 

So, nurse Mike gently asked questions that drew out some of the information underlying my tears and then we started a plan.

 

He set up a video chat with a palliative care doctor during our visit. In that video chat, an email to My G.I. doctor was constructed that cc’d my neurologist, urologist and primary care physician (PCP). He asked for a clear path to be set up to communicate with me on feeding tubes, and other items I’ve now forgotten. He recommended I take someone with me for support. Smart guy.

 

Midway through Mike’s visit, I realized that I was using the name Ben. It felt weird. Finally, when he was leaving, I said, “wait, your name is not Ben, is it? ”

 

“It’s Mike, and it’s really okay, because it’s not easy to work with only 30% of your brain available.” His compassion and gentle smile took away any feelings self-criticism and left only joy for the gift of his visit.

 

 

 

 

Then, at 6:19 pm Friday night my PCP called. My G.I. doc got back to her and has decided to give me a combination feeding tube. There are G-tubes and J-tubes. The G-tube goes into the gut/stomach, the J-tube goes into the jejunum. Mine will do double-duty for reasons (sing it with me now…) I can’t remember. She also gave the not-so-fun-news that the feeding tube doesn’t relieve the pain and nausea, thereby introducing my new life-companion. Feeding tubes, for me, can only assure adequate nutrition. I miss my brain, so I will take the trade-off.

 

 

 

 

Radiology called this morning and my tube consultation is Monday, February 10. I’m taking two awesome anchors in my life as support to help me track the information.

 

 

~

 

 

 

 

My days are filled with constant outpouring of love and support. I’m also grateful for those who challenge me. That way I stay involved in full spectrum living, which is my version of remaining an active participant in this precious existence.

 

 

 

~

 

 

 

Thank you to all who love and challenge me.

 

 

 

 

 


 

Color me intrigued

After I posted tonight, my oldest son (who made this site blog ready and stays on top of the operational pieces) and I had an exchange by text. After he gave feedback and asked a question, I asked him to turn comments on.

 

There was no epiphany as to my public forum phobia. At the end of my conversation with Geoff, I just decided, “Why not? Let’s see what happens.”

 

~

 

A funny-odd thing then happened … no anxiety spike.

 

~

 

(My responses to the comments will be another thing altogether, but I’m mostly ready to skin my knees in that space.)

 

~

 

More weight off my shoulders. Finally, I saw how I was letting anxiety about comments yank me around. This is in no way a proclamation or recommendation that anxiety should be ignored. Anxiety is a real thing in this world. As are panic attacks. These topics and experiences are worthy of much respectful attention. I’ve enormous compassion for every attack of anxiety and panic I, or anyone else, will experience in the future.

 

But for me now, in this moment, I’m stepping outside the wall of anxiety about comments I’ve hid behind.

 

 

Making friends with it all

Before I begin, eventually (unless it is already done) this blog will include a place to subscribe so these sporadic posts will hit your email if you desire.

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What a week and a half this was.

What a weak-and-a-half, too.

Writing mostly every day was becoming therapeutic because I could sit in this quiet space, share raw thoughts and know I am loved, warts and all. Then almost two weeks ago, with a stack of changes in my physical body, a landslide of emotions opened, and I was buried in the avalanche. All vaguely stated to spare the blog from oversharing. Time will help me unpack it all.

But the hero of my day was in the form of a 1hr 55-minute Audible book by Jon Kabat-Zinn, “Mindfulness Meditation for Pain,” I got yesterday. I have not felt this calm in a long time.

By the way, I don’t mind comments, I’m just not ready to field them in a public forum. I still must get to know the editor within. Silly, in some ways, but important for me right now. If you wish to email your thoughts, I’ll do my best to answer. Please be aware that this very short blog often takes all free minutes (usually 2 hours) in the days I do write. A fact, not a complaint or excuse (unless I later discover I’m hiding behind the, ‘not enough time to respond’ claim (I’ve done worse). My email: kalah@kalah.com. Family and friends feel free to text.

~

In my phone appointment yesterday, with my primary care doctor (who champions for me like no body’s business) I got referred to the TMD department for my TMJ, the integrative health department for naturopath referral, and the call ended with me on in-home palliative care, at least while we see what the G.I. Dr. decides about feeding tube ideas.

Hospice is only about palliative care and I know I was not being issued any prognosis. It is just a way to deal with symptoms. Hearing ‘palliative care’ shook me harder than I expected. My heart is breaking. Words to describe all that help much less than inviting my grief to the party and be gentle about it. Must keep the role as a champion for my emotional growth.

This is the first my children, mom, siblings and extended family have heard about the palliative care. My apologies for the gauche, impersonal delivery method. Right now, I just need to sit with this. The palliative care is what it is, and we all are helpless in an empowered way. (That sounded okay in my head but looks completely weird when on the page. Can we be helpless and empowered about the same thing? Something tells me there is a nugget of truth when it comes to certain body changes; even old age, some illnesses and death.)

Weary. That is where I have been. I’ve thought this was a state to be trained to something more stable minded. But sometimes, weary happens. If I was with someone who was weary, I would do my best to hear them and sit with them in the weariness. And there are many beloved people who would sit with me in my weariness. Some of you already have. Many times.

~

Life is perfect the way it is. For awhile I lost track of that. What a delicious thing to find again. Forgetting an important message can sometimes be embarrassing, yet once the message comes home to roost again, it’s a deeper and richer message from the time lost by forgetting.

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I’ve heard that there is a place for comments on here and yet I cannot find them or read them if they are there.

 

Here is my truest desire with this blog: To receive no comments.

 

Connecting with others is a great joy for me. Yet when connecting with others in a public forum, flames of anxiety engulf me, and my health pays the price. Focusing on this energy while remaining curious as to the driving force behind it is a practice I’ve taken on. Posting and even commenting on Facebook most always fans the flames of anxiety. This is one of the reasons I’m so thankful for this blog. I can bare my heart, share my view of life, and it will not be part of any “news feed.”

 

I know it’s an extra step to go look for this blog, and I am thankful for anyone who makes that choice.

 

And I’m working on peeling back layers to discover that which feeds the anxiety meltdowns.

 

~

 

More about comments at another time. My brain is getting slippery and it can feel impossible to complete a thought. It will be lovely if that is a function of lack of nourishment. I also realize I may be heading into some form of dementia. The slippery brain could also be a function of my deep MS fatigue and all the medications I’m on. I suspect it does not matter if I do my best to be present in as many moments as possible. Building a doomsday narrative serves no function but to yank me out of the ever changing here-and-now, which is the only place I want to be. If I’m less tired, I enjoy accepting the humorous reality of a lost thought. Many times a person is answering a question I just asked and I have to stop them and ask, “I can tell you are answering a question, but would you remind me of the question I just asked?”

 

~

 

In last night’s post, I discovered the word syay instead of stay. I thought I’d caught all the misspelled words and started to hunt for instructions on editing posts. Quickly I realized my brain would not be able to follow through any tutorials. That was a spike of anxiety which prompted the part about comments. It is such a weird practice to have compassion on this experience when I’ve lived so long with self-chastising. Yet to reference episode #218 of the podcast, 10% Happier with Dan Harris, “Our egos cannot comprehend our own death, or loss of self, and will fight with any means possible.” That approximates his guest’s quote.

 

I just unlocked a key to myself: anxiety is my ego’s tool to keep me alive.

 

Turns out, it will kill me without my eyes and heart open to the frightened 4-year-old energy inside. I choose to embrace it with compassion and forgiveness. Being a flawed human is to be celebrated.

 

My brain is gone, so rereading for coherency (as with all my other posts) is not going to happen.

 

This is me, allowing life to be publicly messy and accepting of that fact because its my truth.

 

Thank you to all who trudge through this raw space with me. May we all know joy.

 

 

 

 

 

Today I listened to the Podcast 10% Happier with Dan Harris. This episode #218 is titled, “The Profound Upside of Our Mortality,” and I found it soothing on so many levels. And for anyone who wonders, it is not a morbid podcast. 

 

It has been my goal to be as present in every moment as is possible. When I was a hospice volunteer, it was one of the most important things in my life because I knew every moment of our life is important so why would people on their deathbed be less important? Because if they are breathing, they are doing life. Being involved in hospice work was my happy place and exactly where I wanted to spend as much of the rest of my life as I possibly could. Who knew I was getting ready to learn about hospice from the inside? A bit of tongue-in-cheek, because I am not ‘expected’ to die in 6 months. I have learned about relying on others because of failing systems in, or components of, this body.

 


 

 

There are more everyday choices than I want to count which I have given up. Acceptance enough to release what people call ‘my autonomy’ has gone through many phases. I go through periods of mourning, which is potent at times, yet I’ve learned that sorrow for watching myself disappear feels pathetic after a day or a week (depending on how invested in, or identified with, the thing being taken over by MS). The gastroparesis is fed by quite the underground river of sorrow and is a constant reminder of how fragile our humanity is. Yet our humanity is fragile. Still, I have a new normal to attend and being real, gentle and kind about the new normal is essential for my life happiness. And I am still alive. Why would I practice a perspective that will hold me captive with misery? So, I take in new style of food with open arms and watch this underground river of sorrow for this loss with respect for the part of my existence for losing this part of what I used to call self. I also learn to live in my ever shifting reality and let the underground river be my background music. Good thing I adore dissonant music.

 

But I am still the human called Kalah. So, the idea of what or who myself is, is now a function of my choices, perhaps. Something to consider.

 

___

 

 

Life is funny and irreverent and surprising. I recommend looking with a brave heart and a wide-open mind. My new life motto to relax my hold on the outcome of everything I’m able to loosen my grip on: “YeeHaw motherfucker! What’s next?” (After which I use the smiling emoji with a cowboy hat.)

 

 

 

It also helps to check my narrative in effort to let be what is. I recommend Brene Brown’s Netflix show. The word Brave is in the title. (Crummy deal to throw a recommendation without the link, yet this blog and my use of time for the blog is evolving. And I vowed to make as many blunders as I can because fear of being inaccurate or wrong has kept me from putting my thoughts anywhere others could see them. Something in me shouts to write and make a mess of it doing so.)

 

 

 

 

My intention is to stay with all the experiences, even the pain. And the way to do that is something I learned from Pema Chodron, a Tibetan Buddhist nun. The concept is not hers, but the delivery made a lot of sense to me, which is: Consider this discomfort or these feelings as you would a wild horse in a small pen. The way to get it to settle down is to move it to a more open setting. It’ll settle soon.

 

The night wins and I must go to bed. But just so you know, my goal is to continue to syay with the pain, and instead of my lifetime habit of constricting around it, to turn toward it with respect and give it room. It could be my last breath and every moment counts. Like Dan Harris’s guest said, “everyone is successful at dying.”

Reaching Out (and my lack thereof) + an Update

There are so many beautiful people in my life, and I still do not reach out. It is glorious that others reach out to me, regardless of my silence.

 

Due to brain and body fatigue, I will jump to my partial-but-current update. I am beginning conversations with my doctors about getting a feeding tube. My newest diagnosis of gastroparesis is eating me for lunch. MS has now taken charge of my G.I. system. Descriptors must wait because typing with one hand is cumbersome and slow. Plus, it’s my left hand. My right hand’s atrophy showed itself during my last 2 terms at PSU in 2011. By the time I received my forever wheelchair, April 29, 2017, I was officially a, “claw hand.” Writing or typing became dictation. Only recently I realized typing with one hand is easier than correcting dictation snafus.

 

MS took a lot of liberties with my body, and I’m not that attached to having it all back because of the great and expansive opportunities to learn about myself. I still maintain that MS has been, and is, my great teacher. This is absolutely not a wish for anyone (ever, on the face of the earth) to get MS.

 

 

When I was training as an unpaid respite caregiver for Kaiser Hospice (a volunteer) in 2005 (or 2006), one workshop was given by a reverend in charge of Hopewell House in Beaverton, OR. He passed around a bowl with small strips of paper, each strip folded to hide its message. Each trainee was to choose one. Before passing the bowl around the reverend informed us that we were getting ready to ‘hear’ a diagnosis with the slip of folded paper, and after reading the diagnosis, we were to sit silently for 5 minutes, imagining ourselves, our lives, and all implications on our world going forward.

It was a very long five minutes, especially because I was shocked at how deeply I was feeling this pretend diagnosis. When I opened my slip of paper I thought, “‘HEART FAILURE’, I have all sorts of things I can do for that.” Yet the deep stirring of loss gripped me so fast that I was shaken with it. I nearly wept even knowing this was a sort of thought experiment.

 

 

When the eternal 5 minutes were over, the reverend said, “life doesn’t give us a brochure that allows us to choose our illnesses.” His wording was much more compelling poetic prose, and I was profoundly affected.

 

 

For now (explained in a future post), I’ll continue to say: this is me, writing.

P.S. My 2-minute plan actually takes close to 2 hours, but I knew that going in. And it is satisfying in a way that is thankfully indescribable.

Energy

Energy is in everything. We are often not aware how much energy we have available. Take pain, for instance. It is with pain that we look for something to ease it. What if we looked at that which we’ve labeled, “pain,” and relabel it as energy, then look into the energy with curiosity?

The body I’m in has given ample opportunity to find the wealth of energy available to me.

 

I am so grateful for this opportunity.

 

 

This is me. Chock full of energy.

The Editor Within

The Editor Within

 

 

During my 2-minutes of writing (described in the mostly unedited first blog post) last night, I wrote and edited three lines, then deleted them all because the editor within was denouncing and correcting as I recorded thoughts. Finally, I wrote some version of the following, and at the last minute, I perfectly erased everything by sleepy-accident. I dejectedly closed the computer and went to bed. The following is that which I reconstructed of the post, just before I fell asleep.

_______________________________________________

 

And now a word about listening to the editor in your head.

 

The moment you realize you’re listening to a bossy and critical editor in your head, stop writing. I recommend being gentle because your editor could be a composite of voices that belong to other people or experiences. Dive down no rabbit holes of argument or self-defense.

 

Tell the editor:

 

“Time to stand down. Right now it is not your turn. Right now creative writing is going on and this is a work in progress. Your turn will be later, toward the end of the writing exploration. ”

 

This is me.

 

Writing. 

 

Incarnations within one lifetime

Ever waited so long to do something so important to you, that you tremble in fear?

 

For me, this is that moment.

 

Before I begin, I’d like you to meet a crowd of doubts that I’ve carried as long as I can remember. On second thought, I’ll summarize the crowd of doubts on a scale of 1-10. My number is between 17 and 493, depending on the narrative my head is spinning.

 

It started when I was around 4 years old. Not knowing how to write any letters, I was tormented to be a writer so I made wavy lines in varying degrees to give the appearance of a story. I pushed against sadness that tore at my whole self because I was pretending to write. I wanted to write for real. I needed to write.

 

That ache of, “can’t,” became a burning anxiety and was transferred onto everything I’ve written since.

 

A very wise man suggested I use a trick he learned from the book, “Atomic Habits.” If I don’t butcher the idea, it is akin to: take 2 minutes to do the new habit, and at the end of the 2 minutes declare (I’ll verify detail accuracy, if verbally or written later), “this is me.”

 

Hello to a new incarnation. For …

 

… THIS IS ME.