Today is just for sharing a photo of some neighbors. I’m surprised to see them still in the neighborhood as we’re almost into November, but I suspect the grain that spills from the railroad cars is a fine delicacy that makes life much easier at … Continue reading Enjoying Time with the Neighbors
I gave up my driver’s license two months ago after I had a seizure on my way home from the grocery store. Since then I’ve been using my old license just for identification until getting settled in my new apartment. I moved at the beginning of the month and today I was finally able to head to the DMV to replace the no longer valid license with a new state ID card.
The exercise of getting a state ID was a good reminder of what I have to be thankful for and a great look at how class and ability impact our lives. My seizure in August meant leaving the small town where I was living to return to Madison. Madison has public transportation. It is, at least in theory, an accessible community in which to live.
My trip to the DMV today was via the bus. Taking a cab could have been an option, but it cost more than I cared to spend for a trip to just get a new ID. It began by needing to schedule my day according to when the best route options were available. Then waiting at the stop to ride the half hour on what would have been a ten minute car trip. Along the trip I read the information about how the busses are being cleaned during COVID and the rules riders need to follow and pondered how much each ride increased my risk of disease.
Thanks to being given the wrong form and a mildly confused elderly man in the line front of me, my visit to the DMV took a bit longer than expected. That meant walking out the door just as the ideal bus to take home pulled away. So, I walked about a half mile to catch another bus. My trip that would have taken probably about an hour or maybe less if I were driving took about three hours on the bus.
I don’t ride the bus often, but when I do it is clear who the busses serve. The vast majority of people I see are BIPOC, low income, homeless, students, and people with mental health issues. If my experience today is typical and it takes three times as long to complete a task via bus or even just twice as long as it does for someone using a car, I wonder how we can expect people to get ahead? How does someone win when a bus that is a few minutes late makes you late for your transfer or your job? How do you hold control in your own life when you are living by the bus schedule and others set their own times?
The busses are a place where social and environmental justice come together. There are many who care about climate change and clean water and clean air and all those things. Many who know that public transportation is environmentally more sound than private cars, but yet they don’t ride. Why not? I suspect a few things, first there is that issue of timeliness, being able to get to the places they want to go, and get tasks done and secondly there is the issue of the other riders of the bus– those who are BIPC, low income, homeless, and those with mental health issues. Could it be possible if bus service were improved and these individuals were able to begin to bridge the gap, able to access the services they need, get to work, school, and able to run their errands in a more timely way that the busses would become a more welcoming service for all while also making life just a bit better for those who need it? Sometimes we just need to draw the connections. Make it possible for folks to do the work they need to do and life gets better for us all.
Just some ponderings from today’s and a couple of other recent trips on Madison’s busses. What do others think?
The pandemic has provided its challenges and gifts. A lot of people seem to be looking at this past year as having been all about struggle and loss. A year that we’ll look back on with horror or at least deep sadness. I’m not so sure, at least not for myself.
Sure, there has been sadness. My Dad died last July. He was 92 years old. I miss him. I’ll always miss him. But, sadness at the passing of someone who is elderly and in the grips of dementia is always mixed. I will miss him, but I am also joyful that he could let go, move on, and no longer be held by the pain and fear that had become his life. Yeah, I got laid off. But, I got laid off from a job in Minnesota at a really unhealthy workplace where rumors, put downs, lying, and just generally disrespectful behaviors were the norm and wound up through a series of events finding myself working for a good friend on an incredible creative project and back home in Wisconsin.
It’s been a year for being open to possibilities. Last January a severe allergic reaction to a new medication for my epilepsy led to my doctor and I pursuing options beyond medications. In July I found myself at Mayo in the epilepsy monitoring unit. I started my visit on the anniversary of my Mom’s passing. I ended it a week later just after my Dad died by making the decision to honor them both by getting a vagus nerve stimulator implanted. I came back a week later and had the little device that is changing my life implanted close to my heart, reminding me of them. Now, it sends a stimulus through my vagus nerve every three minutes and, along with my medication, is controlling my seizures and making life normal again. My energy is back. It’s been months since I’ve woken up in the morning to a headache and sore tongue, and best of all my doctors and the state of Wisconsin agree that it’s safe for me to drive and live with the independence that a car provides when one lives in a small town.
A lot of people have gone on about boredom and loneliness because of the pandemic and I confess that I’ve had some moments of wanting to get out too, but mostly I have to admit I’ve appreciated this time alone. I’ve been reminded of the joy in slowness and the importance of creative space. I took guitar lesson for awhile, long enough to give me some basics to work with and to continue to teach myself. I’ve started to work on becoming an author of children’s books. Now that it’s spring I just started doing a little volunteering at Taliesin. I’ve been reading a lot more, continuing to write here, doing a little drawing too. How could I be bored or seeking something else when I am given the opportunity to find the creative space? The world runs us too fast and I am thankful that we’ve slowed down for the moment. It is sad that it took a pandemic to slow us, but I can only hope that we find some lessons about caring for our creative selves from this experience.
It’s not been all bad. It’s been a year for staying home and eating home cooking, a year for being creative, a year for relaxing and getting to know ourselves, a year for embarking on a new stage of life in so many ways. What lessons have we learned? What will we carry forth? What possibilities have we opened ourselves to? What is this new life that we are embarking on as this pandemic, hopefully, begins to draw to a close?
There is a Japanese concept known as Ikigai or “reason for being” that I was recently introduced to by a dear friend who is providing me guidance as I think through where I might go in my next adventure. It is a bringing together of that which you love, what you are good at, what the world needs, and what you can be paid to do.
I’ve been delving into this idea, seeking my Ikigai for some weeks now. I remain confused by exactly what is the difference between what the world needs and what I might be paid for. I don’t know if this is a result of having spent too many years in low wage sectors of the work force or being overly influenced by the realities of a capitalist society. But, in either case, or maybe some combination of both, I tend to believe that anything the world needs is something that one might be paid for. I suppose the question then becomes if one could be paid enough to live on, but as I said, I’ve worked a long time in low wage sectors of the workforce. My pay expectations have risen a great deal since I first began, but monetary riches aren’t really on my radar at all. These days I believe in a living wage, good benefits, and a welcoming work place. When I first began all I sought was a welcoming work place, the other two were just added plusses.
Writing my lists of loves and things that I’m good at brought back many memories. So many were filled with songs and stories, art and laughter. They were memories of caring times, whether those caring times showed themselves in miles of hiking for peace or to protect the water or raise funds for raptor rehabilitation or rocking babies or teaching adults or standing on the strike line. They were creative times filled with ideas showing themselves in a myriad of different ways. Some were sung out. Some acted. Others written in poetry or prose or simply spoken in stories.
This is what I have learned or maybe was just reminded of. I thrive on the creative, both that of others and my own. It simply feeds me. I value the opportunity to care, but care alone can drain me. The two together help me maintain a balance. As I seek my path forward I seek the creative and the caring.
I wish you all the best as you move forward and hope that we might all find our Ikigai
I wonder what it is about January that makes it such a challenge? There seems to be something maybe in the air or in my being or maybe just in the cold that makes my body reject the entire month. This year it seems the entire country is having to scrape its way out of 2020 to make an attempt to start again and we’ve not quite made it there yet.
I often look back at my memories on Facebook and I’ve learned from this practice that somewhere right around Christmas or shortly after is often time for a seizure. January is time for a nice head cold that’s bad enough to put me in bed for a few days. It’s also a time for dreams and nightmares. A few years ago I also threw in the excitement of appendicitis. Last year I spent New Year’s at the Epilepsy Monitoring Unit at the Mayo Clinic hoping for seizures and asking for cold medicine.
This year I’m laying in bed waiting for my COVID test results and hoping it’s just another head cold and pondering the meanings of my most recent nightmares. I don’t normally have a lot of bad dreams, but I’ve had three in the past week. I suspect it’s both the powers of January and the changes in my life once again.
I’d thought I’d found the perfect job a few months back, but it became clear pretty quickly that the organization wasn’t ready for staff yet and that there were some people in leadership holding views that I believe to be quite harmful especially when mentoring children. I love mentoring, but not at the cost of any child. So, I had to leave. I was extremely lucky to land on my feet. Some friends of mine run The Memory Project and offered me a role which allowed me to leave the group that I was with.
So, after two intense dreams that might be called nightmares, the first of which I found myself I found myself at a circus with a tiger and a panther sniffing at my feet as I sat on a bench unable to move and the second of which I found myself again unable to move in my bed with an intruder coming in and about to rape me, I made the decision to quit my last job and start my new one.
The circus dream was an interesting one. The ringmaster was there and he told me that I didn’t have to fear the tiger and the panther. He told me that they were mine, wouldn’t hurt me, and that I had the power to move if I chose. It was interesting doing a bit of research later to find that the panther and tiger tend to be symbols of feminine power, creativity, strength, and positive change.
The rape dream was another recognition of my own choices and power. As the perpetrator attempted to attack me, my inner being assured me that this wasn’t real, told me that I had the power to move. It took great strength, as if I were breaking handcuffs holding my wrists, but I moved my arms and I awoke and was safe again.
Sometimes dreams tell us a lot. I decided I had the strength to take the leap into a new world. For the next six months or so, I’ll be sorting student art work, seeking out some freelance writing, working on a book, and deciding what I want to do next as my role with the Memory Project is just short term.
Still, my dreams aren’t gone. There’s still something figuring itself out. In last night’s dream, an intruder had again broken into the house. This time a friend told me she found my dog Buddy locked in the bathroom with a loaded handgun and an open window. She was worried that the intruder was still on the premises. The house filled with neighbors, most of whom I didn’t know as I tried to call the police. Buddy wasn’t hurt. I lost track of him for a few moments and was worried he might be, but then I saw him playing happily in the growing crowd.
I woke puzzled, but realized that in my current rental it would be impossible to lock poor Buddy in the bathroom with a loaded handgun since one of my bathroom doors is actually a shower curtain. Ah, the wonders of rental living. But, it does help me recognize the impossibility of the dream and go with Buddy’s joyous innocence approach instead.
With that, I will lay here and rest a bit more, build up my energy and get ready to leap into the next new adventure with faith that the tiger and panther and Buddy will all celebrate with me this new chapter in life with joy, fun, love, creativity, and all else it offers. Take good care and stay well my friends!
What strange times. I continue to find myself flying about in this bizarre whirlwind of transition where I don’t quite know what to feel or how.
I spoke with a financial counselor this afternoon. I’ve worked most of my adult life in small nonprofits and childcare, so low paying jobs without a lot benefits beyond feeling that I’ve done some good in the world. That means I’m like most Americans haven’t built up a big nest egg and have a few bills to deal with, nothing major. I decided to talk with the counselor though after becoming a beneficiary of a small sum of money. I wanted to use it the best way possible. She was really helpful and we were able to figure out a good plan to address my debt and build my savings. I left the conversation feeling really good. Yet, it feels strange to feel really good about those kinds of conversations.
Mixed feelings came with my VNS implant too. It’s an amazing thing to be there in the doctor’s office getting this little device turned on, to feel that little tickle and feel my voice change, to know that it might really be the ticket to regaining my life and stopping my seizures. Yet, when it was done I couldn’t call my Dad to tell him how it went. All I could do was rely on the belief that he already knew, that he was there in the room with me, taking care of his little girl.
He keeps taking care of his little girl, helping me with my finances, making sure I’m safe and doing all that he can to help me be healthy again. It’s making me so happy, so thankful and at the same time I just want to see him smile, to give him a hug, to tell him I love him one more time. I guess that’s how it always is and that’s how it will be. I am so thankful though and amazed at that power, that power of love that keeps taking care of his baby Amy even after his body is gone.
It’s been nearly two weeks now. In typical times, I’d be back in Wisconsin probably getting ready to make my trip back to Minnesota. Family would be all together. We’d have laughed and cried and laughed again. We’d have all come together with prayers and stories. We’d have gathered together in Dacada around the spot where Mom lies and laid Dad’s ashes down beside her and maybe gone over across the street to have Uncle Nicky make us all a Old Fashioned to commemorate the day.
These aren’t typical times. Instead of coming home from Wisconsin and time with family, I just got home yesterday from Mayo clinic and surgery. The last two weeks have mostly been a blur. Coming home from epilepsy monitoring, Dad’s death, going back to Mayo for surgery, spending some time at Ann and Christopher’s house.
Today is the day that my tears start to flow again. Tears of thankfulness for the dear friends who’ve held me together and been watching out for me in these recent days. I really do feel so incredibly lucky to have been gifted with people like that in my life, those friends and family who are smart enough to see when I need them and to step right in, not waiting for me to figure it out. I tend to be rather slow in figuring out such things for myself.
Tears today too as I spend my day just resting and relaxing. The pause is giving me the chance to just randomly have these moments where my system seems to say “Dad is dead.” It’s coming to that point where it’s real and none of the age old ceremony that we relied on is there, only the questions of what is the right way to honor the passing of our loved ones now?
It’s different than when I was a little girl and Mom died. First, I was a little girl. Secondly, I was surrounded by family and friends and immersed in the ceremonies. It was too much for a little girl. The pain was far too real and too constant. This is different. With Dad I know it will be okay. I know he’s found his peace and that the sadness is my own. I know that I will always miss him. That’s not going to change, but I’ll laugh at the stories and seeing his grandchildren smile in the way he used too will touch my heart and give me faith. Still, this is that sneaky sadness and it just hits me with no forewarning, tells me that he’ll never give me one of his Dad kisses again, that I’ll never get to hug him one more time. All I know in that moment is that I want that one more hug, that one more Dad kiss, and it’s all gone.
I guess hugs and kisses are something that are handed down. My Dad hugged and kissed kids and grandkids like his aunt Sr. Christine used to. Maybe the only thing to do is keep handing them down. Keep the hugs and kisses going. Keep telling the stories. Honor the spirit. Guess I’m just going to have to be the old auntie with hugs and kisses. That’s what I can do.
You know it doesn’t really matter what else we do. Nothing really is bigger. Dad used to make point of giving me a hug and kiss every time I came to visit. We always made a point to tell each other that we loved each other. As a young adult, I found it kind of goofy. As I aged and Dad got old, I came to appreciate it and recognized how much it meant to him. Now, I think I’ve come to realize the gift he gave me in that little action. That little act told me that I was somebody special and now I get to always carry that with me.
Wow. If there’s someone in your life that you value, please tell them again and again. Please give them the gift that my dad gave me and let them have that treasure of feeling value and self-worth. It is an incredible gift.
It’s been hanging out around 90 degrees in Rochester today. It wasn’t a good day to leave my water bottle in the hotel room. It was good that I was smart enough to wander through the Arts Center rather than go with my original idea of taking a longer walk along the river. I suspect that feeling of being worn out and the headache that came about by the time I got back to hotel room a couple of hours ago might have moved into seizure territory had I done differently.
It’s funny. I take much better care of myself now than I used to. Not having my water bottle didn’t mean that I didn’t drink water today. I had a sparkling water with lunch and a couple of glasses of water with dinner as well as the water I’d drunk before I left the hotel and a smoothie in the morning. Once upon a time I might have had the smoothie, but lunch and dinner probably would have included a cherry coke or some other sugar and probably caffeine laden poison. Now water just makes sense to me. It’s the thing that I drink most. I don’t eat much junk food either. It really is something that I have as a treat and even then I tend to go for just a bit of something really good. Life has changed me. I see my relationship with my body differently and treat myself better. It’s good.
Anyway, today’s adventures at Mayo were mostly pretty simple. I started with my blood draw and nasal swab. The blood draw waiting area had the grumpiest group of patients I’ve seen at Mayo, but I didn’t find it bad at all. My blood was drawn by a student and she did really well. I was impressed. I know that my veins can be tough and even that early in the morning I was wondering if I was a bit dehydrated.
The nasal swab was quick. It sucks, but that’s no surprise. It’s just not going to be pleasant to have a q-tip shoved up your nose. That’s an obvious reality. I left there thinking, “I am really glad that I don’t have Lauren’s (the q-tip person) job. Can you imagine putting q-tips up people’s noses all day? Well, I am thankful that she does it and hope that she finds reward in her work.
After that was a trip to the allergist. She’s not convinced that the diagnosis of DRESS Syndrome that I got back in January was correct. She’s wondering too why my rash reappeared several times since then. But, since it’s gone right now it’s a bit tough to tell. She’s going to keep studying the information that we have. I’ve agreed to see about getting a skin biopsy if the rash reappears again. Personally, I think my hope is that whatever it was is just done.
The most interesting thing though about the visit with the allergist wasn’t so much what I learned about the issue, but what I learned about my memory of the past few months. Thankfully, she could access all my records because even with my notes I had jumbled dates and wasn’t even certain what month things happened. It was really interesting. It leaves me wondering how much my memory is being impacted by my seizures and medication and just how much is the stress of life these days, but it was a mess. I suppose I will learn more when I have my memory tests next week.
Until then, I am on vacation enjoying the sites of Rochester and, honestly, mostly just taking advantage of being in a larger city than my current home of about 5,000 and eating a whole lot of good food at all the sidewalk cafes!
One of the realities of living in the world today is that our bodies are filled with toxins from before the time we are born. The air we breathe is polluted. The water we drink is polluted. Much of the food we eat is treated with chemicals or maybe isn’t really food at all, but simply a mix of chemicals politely called “processed food.”
There are benefits and there are downsides to this reality. We grow a lot more food then we’ve ever been able to in the past, but it’s generally less nutritious, or at least that’s true of the conventionally grown foods. We have tons more stuff than we’ve ever had before, but I’m not sure that we have as much, much less more happiness. We’ve also got a lot more medicines and health care tools to keep us going. Sometimes that’s great. Sometimes the medicines can add to the disease. That’s what brought me here today.
As many of my readers know, I was diagnosed with epilepsy. I think it’s about seven years ago now. Generally, it’s not a huge part of my life. It’s largely controlled by medication and I go about my day to day like anyone else. Over the past year or two though I had a couple small seizures which I suspect were caused, at least in part, by a stressful job situation. In any case, my doctor and I decided to try some changes to my medications. The changes didn’t work.
I had an allergic reaction which became something known as DRESS Syndrome (Drug rash with eosinophilia and systemic symptoms). I can be thankful to say that with a great team of physicians from the Mayo Clinic, mine was caught early and no major damage was done. Still, now and for the foreseeable future, the added toxins in my system mean periodic flares with exhaustion, weakness, rashes, and other symptoms.
So, instead of getting beaten down by this new challenge, I am trying to find the opportunity to learn and to renew. Yesterday, I sat down with my integrative medicine practitioner, Dr. Kelly Felmer, and we agreed on a plan. Over the next ten days I’ll be embarking on a detox diet; no dairy, meat, grains, artificial colors or flavors, and following a strict set of guidelines on what I can eat focusing on lots of healthy fruits and veggies. This morning is starting with a nice smoothie made with blueberries, raspberries, and blackberries, carrots, and spinach. After the ten days of detox I’ll start on the autoimmune protocol, another clearly defined diet to help me heal my gut, get rid of toxins, and determine what foods might causing me harm. That will take at least a few months probably longer.
It’s a journey, but one that I get to define and one that, I hope, will get to the root of the health challenges that I’ve faced and make my overall physical, spiritual, and emotional wellbeing better for the long run. My plan is to share that journey here. I hope that you will come along.
It’s been a few weeks. It feels that I should write something, but I’m not sure what. Life continues to present its challenges, encouraging me to reframe and seek the gifts.
I am continuing to look for a new job. I’m thankful to still be working at UMM, but it’s not the place for me. Maybe I’ve spoiled in my life in grassroots nonprofits, but I’m not interested in the hierarchy or pettiness. There are a lot of good people and I will always be thankful for having had the chance to meet and get to know them. I am thankful too for the opportunity to get to see the university from the inside at this point of my life.
We all know it’s not a good time to be looking for work. I am thankful for all my experiences and for not being held in any one place. I feel confident that I will find a great new adventure where I will be able to take my skills to make people’s lives just a little bit better.
My body remains unimpressed with something. It’s continuing in what is now the 3rd week of a rash that seems to probably be a reaction to my medication. It reminds me how much my body has to work with, how much I need to care for myself. It is a good reminder of the importance of my meditation, time away from the screen, time to play music, to cook, to be outside, to eat good foods with plenty of vegetables, all these things to show myself love. The doctors will give me medication. They will do their roles in providing care. But, it is my role, it is each of our roles, to give our bodies the best care we can. They are the only bodies we’ll have after all.
We all have these times. All we can do sometimes is just take some time off. Today I baked bread and attempted to make dandelion jelly. The bread worked. They dandelion jelly turned out too thin to even be syrup. But, it was an afternoon in the kitchen, just relaxing, doing something different. It was good. How are you taking care of yourself today?