I have a disease that cannot be fully diagnosed until I am dead and they look at my brain. On that day doctors will look under a microscope and be able to tell for sure if a certain protein has folded itself into arrant origami, unable to pass through the neurons. Although I will gladly give my brain for research, I am requesting that my family not be told whether I actually had Multiple Systems Atrophy or if it was just a wad of bubble gum stuck in my ear. I do not want them to think that there might have been another cause for my symptoms or to think my medical team did anything wrong. If only they had pulled that gum out of her ear everything would have been fine.
It’s pretty clear at this point, after 10 years of fainting and losing control of my bladder to finally find a doctor that could order the right tests to rule out the other things it could be.
I am ten years into having MSA, and two years more with a diagnosis. According to the Mayo Clinic website, people with MSA typically live about seven to nine years after multiple system atrophy symptoms first appear. Ten-year survival is rare. The thing is I decided to be a non-compliant patient and not follow all the orders I am given. Dr. Bernie Segal, in his book Love, Medicine and Miracles noted that non-compliant patients often lived longer than those who follow all the instruction and die on time.
I have explored every nook and cranny of alternative medicine, faith healing and even several years of therapy. I though what was happening was all in my head. I was right, but it was not a mental disorder.
A DAT scan showed I have a buildup of alpha-synuclein proteins, folding into wacky folded origami that stops the flow from neuron to neuron. There are a bunch of diseases that have a similar story. A protein of one type or another, fold up incorrectly somewhere in the brain. They cause Parkinson’s, Alzheimer’s, and many others. It just depentds on what protein and where it is in the brain. With MSA it boils down to a deterioration and shrinkage (atrophy) of portions of your brain (cerebellum, basal ganglia and brainstem) that regulate internal body functions, digestion and motor control. Not something you want to have.
MSA does not have a list of definitive symptoms, it’s more like a choice of one from column A, three from column B. Depending on the combo, there can be a Parkinson’s type or a Cerebellar type. So people who have this disease often question whether their symptom could be related to MSA or not. Dry blurry eyes? Yep. Cough and choking? Yep. Pretty much every answer is yes because of the multiple part of the disease.
This is about my personal experience, for goodness sake see a doctor if you have any of these symptoms, they all suck. Thank you to the Mayo Clinic web page for the actual medically correct information:
Predominant signs and symptoms are those of Parkinson's disease, such as:
Predominant signs and symptoms are lack of muscle coordination (ataxia). Signs and symptoms may include:
This is what happened when I was told I had MSA. Remember much like being informed of the death of a loved one, sometimes what actually is said is not what was really said. Your brain shuts off at a certain point. It is always a good idea to have someone with you for doctor’s appointments. So here is my account, which my husband says is not correct.
Two really smart Neurologists came into the room,
never a good sign.
Doctor #1: First the good news, you don’t have Parkinson’s.
Me: Thank goodness! That would be horrible!
Doctor #1: Well, you do have another Parkinson like disease (looking at the computer screen not me) It’s called Multiple Systems Atrophy. I have asked Dr. #2 to come in with us, she is the specialist in this kind of disease.
Me: speechless, dizzy, can’t breathe
Dr. #2: I suggest that you apply for disability right away. MSA is on a compassionate care list of diseases that will move you quickly along in the system. It is a list of disease where time is of the essence. Then get to know the hospice group in your community. You might not need them right away but it’s good to have something prearranged. Oh, and we want your brain for research after you die.
Me: Is there a surgery or pill? Some cure for this?
Dr. #2: No, I am sorry. We can treat your symptoms and keep you comfortable, but there is no cure for this disease and there is a shortened life expectancy.
Me: Well *&$!@$%^&&!!!!!!
My husband and I make our next appointment and walk without speaking down a long corridor to the parking garage. We both started crying. I said I was going to commit suicide when it gets really bad. He said yes, I know, but that is not today.
This evening I took a walk with my husband Chuck in my new wheelchair. I was surprised how emotional I was, moving from a scooter and walker to my wheelchair. It felt like another cog turning in the timing of my life. I have an actual wheelchair, signaling a progression in my disease. At the same time that same chair offers me amazing freedom to be out in the world. Maybe even a trip to Dick Blick, my favorite art store.
I had decided that as I first rode in it I would create some other diversion, so instead of people saying, hey she’s in a wheelchair they would say wow, look at that huge sombrero. I decide on some multicolored streaks in my hair to draw the attention instead of the sombrero. Actually, no one has said anything, they just smile, I am sure they are noticing my hair, not the pink wheelchair.
Oh yes, did I mention I have ended up with a pink wheelchair? I could not decide on a color, but my granddaughter saw the pink one and the next thing I know they have delivered a stunning pink chair. I still can switch it for red, but the pink is growing on me.
As I start writing about moving into a wheelchair I am guessing you have guessed that I did not get that pesky bubble gum out of my ear, which is always my hope. All my symptoms disappear as the pink blob is removed, so that’s where I put it! It was not MSA after all!
I have however, finally reached a really mad and smart ass stage of my disease. In one day I fired and rehired my neurologist, and then for sure fired my neuropsychiatrist. A bad appointment with the neurologist ended with her scheduling more tests and then making an off the cuff comment remark that maybe I did not have MSA after all. I cried. She was surprised I would not be overjoyed by this news, which did nothing to change any of the horrible symptoms I am having.
My second appointment of the day was with the neuropsychiatrist. This is the doctor who looks at the many and varied medications all my other doctors have prescribed and figures out if I am going to explode from the mix. I should point out that these were back to back appointments; I left the neurologists office in tears to enter the den of a psychiatrist.
She read my chart, notes my tears and we talk briefly about feeling upset with my appointment with the neurologist. By the way one of the symptoms of MSA, which at this point my doctor swears she never said I did not have, is emotional incontinence, I tend to have waves of huge emotions, but who wouldn’t?
So the neuropsychiatrist looks at me and says, Do you have a plan to kill yourself?
Let’s see, I have an illness that will continue to progress until I can’t move or talk but will have a perfectly fine brain, chugging along. I have discussed the death with dignity option, which is legal in my state, with all my doctors, mental health therapist and my entire family. And I have a clear contract that I would include everyone in the decision process. So I answer yes.
Do you have an actual plan set in place?
This is not a decision I take lightly, I would need to have already talked to my doctors and gotten a prescription before it is time, so of course I do.
What method would you use?
Pills, of course. Surrounded by my loved ones, I will go peacefully to sleep and into the arms of the Beloved.
Do you have these pills?
Probably not the actual ones, but if I needed to, I could come up with a mixture that would do the job. But let’s be clear, I am not planning to do this anytime soon.
It is not healthy to go around planning your death; I think you should be hospitalized.
I realized at that moment that she did not want to know my logical plan, and probably with good reason, she thought she was speaking to a teary wacko ready to jump out the window at any moment. She did not know me.
I am crushed. A few days, she says, just to make sure you are safe. I will call down to the ER and they will admit you from there. So here is this doctor with years of medical training and experience is telling me I need a few days in the hospital. What to do?
Chuck and I headed to the ER, somewhere in my mind I was just giving in. Maybe I am really suicidal, I don’t feel suicidal. But the doctor says she thinks I am, and she said just a couple days.
So in we go. If you have ever had this experience and really did need hospitalization, God bless you. But I did not. That thought came to me sometime between me having to relinquish all my clothing, being placed in a “special” gown, so garish in color that any escape attempt could easily be seen from the moon. Then a 20 something social worker with a clip board of questions entered leaving the exam room door open so the guard stationed outside my room could keep an eye on me. Then the social worker explains I would be in the hospital for at least a week.
It took me four long hours to talk my way out of there. Thank goodness that my therapist answered her phone, vouching for my mental stability, tendency to speak in a straight forward manner and my horrible morgue humor.
When I got my new pink wheelchair was described as having 4 speeds, the highest to be used only when needing to quickly cross a street. I found there is a 5th speed, and used it.
Anger Assisted in Break Through
I use a technique called Mind Mapping. It is a kind of real life puzzle that can be solved, only through the experience itself. I started with circles representing what was true for me.
“Love of Family” “My Spiritual Community”, “Writing and art” and “My Health Plan”. Then from those main circles I began to connect up the things I am already doing, or want to change about my life, like not speaking so bluntly to a doctor ready to hospitalize me.
I write: I spend quality time with my family. And I am willing to accept the love and support of my spiritual community.
I spend time every day in prayer and meditation, aligning myself with the Divine Healing that flows through me right now.
Under “Health Plan” I write: lie to all my doctors. No, that is not what I want, so I cross that out and write:
I create clear communication with my doctors. I am in charge of my health team. I make the final decisions in my care.
Then I remember that what I really want to do is see a local naturopath who does vitamin I.V’s. I have had them before and it was the best I ever felt. But alas, I quit because it is just so expensive. So I connect my writing and art circle to my health plan:
I create and sell my artwork and book to abundantly support my health.
So today I had my first injection, not a full IV yet, maybe next week, but my Master Mind is in action and life is good and very pink!
It has been quite a while since I have felt the need to write. My disease continues on its course, there are adjustments in my life to be made. I spend much of my time painting. Sometimes 5 or more hours a day, and late into the night. Most of my drawings are Mandalas. I feel a sense of calm and peace when I am painting, everything else falls away and I am only that which is painting.
I spend time listening to audiobooks, somehow my computer and Kindle have developed this blurry double letter thing. I am sure it is the device, but it has spread to the bookshelf, alas.
I will never sing in the opera or dance the, well, dance anything again except the Hand Jive. At this point I am in gratitude for being able to walk with a walker short distances. There are some things I simply don’t have to worry about any more which include sunscreen, mammograms or unprotected sex with strangers. Unlikely as that is, or has been, in the 45 years of a monogamous relationship, I am still keeping it on the list.
What has called me to write now is because I bet you want to know the details of what it looks like to have a disease that is so rare that you are more likely to find a lump in your breast while having unprotected sex with a stranger without wearing sunscreen.
I have moved into having “home health care”. Which means instead of spending an hour having someone help me get ready for an appointment, then bagging out because I am exhausted from getting ready, all my services come to my house. O.T., P.T., speech therapy and a nurse visit, both a couple times a week. I go to my doctor’s appointments and church. So, besides the rare times I can talk someone into taking me and my scooter someplace, or go to Dick Blick, the Seattle art mecca with a huge selection of Tombow watercolor pens after one of my many doctors appointments, I am pretty home bound. I have discovered that I can order from Dick Blick on line, so Chuck has taken my credit cards and put them on the top shelf. I faint if I lift my arms up, drat.
The home health care is great, but a little weird to have so many people in my bedroom. The inner sanctum of my house. I now have an official “visitor’s chair” which is used by health care providers and good friends coming to visit, preferably bearing donuts. Every caregiver asks me the same questions, possibly hoping to catch me in a lie about my last fall or the amount of donuts I am eating. One of the questions they all ask is about new symptoms. So this will be a good place to catch you up with The Days of One of Cathy’s Lives.
In our last episode I had just fallen trying to get the credit card down from the top shelf and straight out lied to Chuck about the incident. I had caught myself on the way down on a chair and no bruising occurred so I felt I was within my rights, only to be busted when the neurologist asked me about the last time I had fallen.
My shortness of breath and swallowing issues led to the purchase of the most expensive bed in the world, a king size sleep number adjustable bed that tracks how you slept, your pulse and rate of breathing. My grandchildren are enjoying pretending they are on a plane and need to bring their chairs into their full and upright position, as they push the button that brings the top half of the bed up.
The full and upright position is helpful for me too because I have to sleep now sitting up. I tend to faint when I am flat, and find it difficult to catch my breath. So naturally I had to have a third sleep study. I swear the new bed ratted me out, and now I am moving into the wonderful world of oxygen. At this point I don’t actually have any, besides what Mother Nature has gifted us, as in “it’s in the air”. But there is plenty of talk about needing more.
The amazing and wonderful thing about our new bed is that Chuck bought it so we could continue to sleep in the same bed. I love that. What could be sweeter than to know that I will never have to be in a hospital bed and that we can always cuddle.
I am being “fitted” for a wheel chair, not that I need one now I am told, but it is always good to know these things. Has someone ever offered you with a wheelchair fitting? Maybe at a fair or something? Offering the newest model at a special fair price? That booth would be right next to the coffin fitting booth. I did read that Walmart is now selling coffins. I have said I would never shop at Walmart, maybe I said if I was ever to shop there it would be over my dead body. For those of you who think coffin jokes are in bad taste, please note that morgue humor is on my allowable list along with sunscreen.
Another big shift for me is I am now on a pain patch, which is amazing for someone who has had years of pain, why didn’t someone think of this before? It is wonderful, but the disposal method is very odd. I remove the patch, put it on a special sticky paper, which folds over another sticky paper then carefully placed in a hermetically sealed jar which is picked up by armed guards. Apparently the used patches are quite popular, which explains all the people lurking around nursing home garbage cans. Next thing you know addicts will be tackling old people, stripping them bare in search of pain patches.
Now for the biggest most horrible change and that I just spit out whatever is on my mind. I know I sound perfectly well at this moment, except for the coffin joke, and the unprotected sex comments and the admission that I lie about falling. Okay, maybe my new lack of govener is showing a bit, but I have had some really bad turn-a-phrase incidents recently. I have offended over 30 members of my family, many of whom, both friends and family, have un-friended me from Facebook, which is like being both excommunicated and shunned and the same time. I will say that all my close loving friends and family all still love me, knowing I have always been a bit quirky, and nothing could stop them from loving me.
So there it is, I have no interest in shopping for anything but Tombow pens and watercolor paper. I will try to stop painting long enough to write again soon. I had to find something else to do tonight because I am on painting restriction because of my crazy cramping, which has curled my right arm up like a pretzel. This has gone pretty well for one handed typing.
The truth is some days I just panic, thinking about what is coming. Which is why I am incredible thankful for my spiritual practices that have strengthened me to deal with the realness of life. I highly suggest, whatever your tomorrow looks like, to stay in the present moment. And hang in there even if you say something stupid. Love has a way of mending fences, and even a brain now and then.
I am finally well enough to get up for a long enough period to get into my office to my “big girl” computer. I have a Kindle so I can look at my e-mail and type out a short message, but to really write I need to be able to get out of bed and to the keyboard.
Plus the truth is I have been depressed. So it is an emotional trip, as well as a physical one that has kept me from writing. I tend to want to wait until the other half of the story, the good and happy part, emerges before I write. I had a really bad day, but then….
Right now I am in a place where the turning point towards the light seems far away.
I have become resistant to several of the antibiotics that are commonly used. Since the first of the year I have had to be on antibiotics more than a dozen times, including a couple rounds of IV antibiotics. Even though I am now on the third type of antibiotic I have taken back to back, I still feel horrible.
Close to 30% of people who have MSA end up dying from a urinary tract infection. I have been dreaming about taking the catheter out myself, although that would not stop my urinary issues or stop the chance of infection. My daughter, the nurse, has asked to sit down and have a talk with me about the steps taken when someone ends up in the hospital with this kind of infection. She says that there might be things I want to decide ahead of time, like the things I already have written like “do not resuscitate, or do not intubate”, there might be some additional things I might want to add to my directive. I can’t imagine what those things are, maybe “don’t poke me with a fork” or “do not play country western music in the patients room”; but probably not.
I have filled three journals since my diagnosis a year ago. The last one I filled in less than a month. I find drawing is very helpful to keep my anxiety level down. I this last journal most of the drawings are mandalas, which seem to be the most relaxing for me to draw, but as I draw late into the night and my hand craps up they take on an edgy, frantic look, like drawing it will somehow keep me alive.
I keep thinking I am doing something wrong to get these infections. And other people are always ready to jump in with their ideas. So are you changing your catheter bag often enough? (No, I have been hired by the government to develop a new weapon of mass infection) Are you drinking enough water? (No, I have totally switched to tequila).
I am following all the reasonable advice about how to care for this bizarre tube sticking out of my stomach. Drinking lots of water, no baths or swimming, good hygiene, frequent equipment changes, once a month sterile tubing change. But that number, almost 30%, keeps going through my mind.
I have started a list of things I no longer have to worry I am going to die from. I have stopped wearing sunscreen and have a great tan. I could (but have not up to now…) smoke all I want and drink like there was no tomorrow. I could have unprotected sex willy-nilly and not pay attention to signs that say Danger. I could skydive, start fights in bars, and hunt rattlesnakes.
I think instead I am going to continue to do the really dangerous things like breathe deeply, feel all my feelings, say everything I need to say, and live my life to full each precious day.
In grace and ease,
My favorite quote right now is from Anais Nin, “Life shrinks or expands in proportion to one’s courage”. So courageously saying yes to traveling from Washington State to Washington DC, zooming through airports in a scooter, with a catheter and a very little amount of energy, my husband Chuck and I traveled to Bethesda, Maryland to the National Institutes of Health where I participated in a week long study for early identification of Atypical Parkinson’s, Multiple Systems Atrophy.
I thought long and hard about traveling across country to participate in tests that really would not help me get better, but I am at heart a teacher, and as such I felt I wanted to help others be able to find the answers to their questions earlier than the years it usually takes to pin down some of these tricky atypical Parkinson’s diseases. I felt I could really do something to make a difference.
The entire experience was amazing. Every nurse was caring and friendly. Everyone I met, including Kay, a Chaplaincy Intern who prayed with me twice, seemed to be there because they had found their calling. And on top of the wonderful care, the food was great. You order like a restaurant whenever you want and they will bring up anything you want.
I am especially grateful for the amazing care I received from Dr. Goldstein, Dr. Cook and Nurse Practitioner Extraordinaire Jennifer Pope. If you have been diagnosed with some horrible neurological disease, these are the research team you want.
I lost count of the amount of times I was stuck with a needle. The first night I was there I ran through four highly trained nurses, who all were sure they could draw some blood, not even an I.V., just to get a blood sample. Finally the Pro from Dover (If you are not familiar with that phrase, please order up the movie Mash) arrived and bam, I had an IV, blood was flowing and all was well…for about 6 hours, which seems to be my I.V. max.
I had blood tests, a CT scan, and then 3 hours with my arms up over my head having a PET scan. When asked about my super human endurance to stay put for so long, besides the fact that I have an indwelling catheter, my answer was meditation. I spent that time at my beach cabin watching shore birds. I ask them not to have me to respond verbally when they were checking in, but I would raise my finger only. When I am deep and down I want to stay there.
Next day it was only 2 hours in the PET scan. Then I had a lumbar puncture. The hardest and most painful part of the week was when I had to stay flat on my back for 6 hours of excruciating back and hip pain. I am making an appointment with my orthopedic doctor this week. I should not have bragged about my amazing meditation abilities.
I also had a sleep study; I think the technician used Elmer’s glue in my hair. I could not wash it out the next day because I had 5 biopsies on my leg, I could not shower for 24 hours. More blood draws, an echocardiogram and then a vanilla shake. Really, I could order anything…sweet! It made my life with glued hair bearable.
They also did a DNA study, I will know way too much about my probable course, and any inheritable disease I could pass on to my family. Chuck has a lot of cancer in his family. When asked about if he thought he would inherit that family curse he said, “I inherited that thinking style, not the disease, how I think is up to me.” So in the middle of what appears to be so real I remember the great Shakespeare quote; “There is nothing either good or bad but thinking makes it so.”
Although the week ended with a meeting with Dr. Goldstein and his staff, we really will not have the full information for about a month; then it comes privately to me. Outcomes, specifics, dastardly facts; all mine to decide with who and if I share this thinking style.
I am still tired from the plane ride, but so glad to be home. I woke up the first morning back with my 4 year old granddaughter Nora’s face right up next to mine, “Can you draw me a doggie fairy Zuma?” I am home.
In two hours Chuck and I leave for the airport to begin our trip to the National Institutes of Health in Maryland. I am going to participate in a study to find methods so doctors can diagnose Multiple Systems Atrophy sooner than the amount of time it currently takes. I figure I had MSA for many years before my diagnosis, not uncommon for this disease.
I have been given a long list of tests that I will have this week. Some of these tests will help me to know more about my disease, where I am in the greater scheme of things and if there is anything I can be doing now to assist me in my quality of life.
Needless to say if I am writing this at 3:29 a.m. and we leave at 5:30 a.m. and I am a little nervous. Actually the whole airport routine and the plane ride itself is the biggest part of my sleeplessness. You can imagine going through security with 2 shoulder and 2 knee replacements, many pins and other metal bits in other locations, and catheter bag. Last time I flew I realized that I could have a full cath bag full of some explosive. Nobody wants to come near it although it could be filled with gas. (note to any bombers who are reading this, please disregard that idea). Security will quickly takes me aside, asking if I would prefer a private room for a personal pat down and look-see I know this is going to take some time.
Not long after 9-11 I was flying out of Newark, NJ. I had a jacket on and when the alarm went off indicating I had something metal around my shoulder, I, of course, start to reach up to show them my recent shoulder replacement, saying "I have a..." (Just for future reference, DO NOT DO THIS.) I was tackled by three nervous guards who thought I was reaching for a gun. I have learned to say, with my hands down, "Would you like me to tell you about where I have metal in my body?" It's about then that they begin steering me to a private room. Chuck goes through security, gets a latte and comes back 10 minutes later to pick me up.
I have told everyone that if something happens and I die this week it is all good. I am always in the right place. Just knowing I have said this to family and friends makes me realize I am a bit out of sync with what I am really feeling about this week of tests. I am sure I will come back with rave reviews of the hospital stay, the food, the trip and all the information I received from my DNA study and all the other tests, but the truth is I am more that a little scared. Just one of the planned tests would be considered a big deal, I have four days of poking and prodding. Stiches will be involved as well as IV's and tape that I will probably be allergic to. Really, a great trade off, but I will be happy to be home next weekend.
The picture I have with this post is the last page of my 2nd journal. I started writing and drawing in a journal since my diagnosis last August. When I start a journal I drew the last page first with the understanding that I actually could die before filling the journal. The first journal has a drawing of amanita mushrooms, the lovely red mushrooms with white dots, often drawn in children's books with fairies. (amanitas are a poisonous mushroom,and used by shamans and other knowledgeable folk as a hallucinogen). Under the mushrooms is a small chair with a long row of knitting, the ball of yarn rolling away like I just stood up. The words say "You just missed her".
The 2nd journal's back page is this milkmaid who has just spilled her milk. It says, "Sometimes things happen, don't cry over spilt milk, I love you all!" I am now starting my 3rd journal and am thinking about what the last page of this one will be since I have no intention of dying during the writing/drawing of this one. We will see what I come up with.
I think this is about enough for now, I have given a horrible recipe to bombers to get past security in airports and information about using a really poisonous mushroom for possible recreational drug use, great.
Life is wonderful, funny and unpredictable. Don't go licking any red mushrooms.
In grace and ease,
Here I am, moments before the procedure I said I would never had. I am smiling because 1.The nurse was able to put in a really nice IV and 2. I have this really cool heated blanket on that blows hot air through the whole thing. Small pleasures.
So I am home, with a bit of an infection so I am on antibiotics once again. I am still in a period of shock, and overwhelmed by all the tape and tubing that has suddenly become the reality of my life. Grief of change, loss of the plan for my life, another wave of the realities of MSA flood over me.
This month's Spirituality & Health magazine has a column by Geri Larkin, author of Close to the Ground; The Seven Factors of Enlightenment. She talks about learning to lean into suffering. "Until we realize that there is simply no escape from the pain that life brings and that all we can do is sit in the middle of the fire, we only pile suffering on top of suffering. Resistance is like that. So we lean in. And suffering dissipates."
Living with terminal illness is like being hit by a series of huge waves. Life goes along day by day; I begin to think I have a handle on how this disease works and BAM! Something knew.
Having MSA sometimes feels like some deviant gnome with sharp scissors is living deep in my brain; ready to cut the next connection to some important body function.
This gnome has been hacking away at whatever the cord that connects my brain to my bladder for some time. First I had an occasional accident, which I chalked up to just getting older. So I began wearing pads and began a serious exercise program of pelvic floor exercises, guaranteed to do the trick. So when that didn’t work I began all the tests with an urologist, including a test that includes electrodes, tubes, wires, a male x-ray attendant, and a bucket. I am not kidding.
Many medications followed more pads and finally a sacral nerve stimulator that actually worked for a year before the deviant gnome finally managed to disconnect my brain from my bladder. Diapers ensued. I have been told that in the world of adult incontinence they are called by the brand name Depends. They were somewhat dependable until the gnome found yet another small connection to snip. So Wednesday I am having a “Supra Pubic Catheter” put in. This is permanent, unless Jesus himself comes down and yells surprise! This was all a joke! A tube will be placed in my bladder and out my lower abdomen, hence the supra “above” the pubic-bone name. The catheter then flows into a bag, attached to my leg in something that looks like a holster. I imagine robbing a store by grabbing the bag and yelling stick em up! They would probably give me the money just to get me out of the store.
Once again I will go up to Seattle for a day long procedure, including having to have a nearly impossible to place I.V. Last time I had two anesthesiologists using dueling ultrasound machines looked for one tiny vein, while the nurse quietly checked out my ankle, finally finding a vein and getting the I.V. in before either doctor could even find a vein. You have to love nurses.
When I first was diagnosed with MSA, before that naughty gnome got to my ability to balance, hold a cup without shaking and caused me to pee all over the place I made a list of things I absolutely would not do. I just could not allow my family to care for me all hooked up like that. For example I would never have a tracheotomy, or a feeding tube, a pacemaker or a supra-pubic catheter. I was convinced at that future moment in time, these things would be deal breakers and that I would end my life before allowing these things to happen to me.
Today I spent the morning with my whole family at our annual Easter brunch. I have many cousins who were there, cousins with new babies, kids who have grown a foot since last Easter, kids I couldn’t even place the family is so big. My brothers and sister and all my wonderful nieces and nephews were there, and of course, more babies. As I write this all three of my grandchildren are playing in the backyard, reenacting their favorite movie Frozen on a trampoline. I could have missed that.
In the middle of this next big wave I am surrounded and held by those who love me. My husband and daughters, my grandchildren and friends. And I come up for air long enough to recognize that I can still be here, still engaged with a tube in my belly, or for that matter any number of wacky things I swore I would never do.
My dear MSA on-line friends, people with MSA and their caregivers wrote in response to my asking the question “When is it enough?”
From a caretaker I received this note:
“I know my mother felt like a burden to her family for having to depend on us all completely for her care.
But this is how I felt about it; yes it was very hard work and there were times you thought you couldn't take anymore. But I wouldn't change that time with her for anything in the world.
She was taken far too soon as it was at 63. So anytime that we had left with her was priceless. I look at it this way, when your daughter was a baby, she was completely dependent on you for her care, and even all the ugly phases of that... as we all know, taking care of an infant is demanding too... but would you trade that for anything? Your love for her overlooked anything demanding that you may have had to go through during that time. It is the same feeling for us caregivers. Our love for our mom/wife/grandmother is what carried us through that time and we WANTED to care for her. We wanted her here for as long as we could have her. As taxing as that time was for us all.... I would not hesitate to do it all over again, to be able to spend that time with her again. Let them love you.”
So I am scheduled for Wednesday to have a procedure I said I would never do, and I am happy about it. The big waves continue, but I am getting better at this soul surfing.
The story goes that in the mid 60’s my Grandpa Bill financed a tavern for his son Bob. Grandma Lu seems to have been left out of the loop, as this transaction came as a bit of surprise to her. Now I am not sure if the purchase of our cabin, Granny’s Pad, transpired as a direct retaliation to the tavern, but however it happened, my Grandma Lu bought a cabin on Hood’s Canal for her three daughters.
I remember my first visit to the cabin. It was the summer of 1965. We drove down Highway 99 to Highway 101, then through Shelton and right along the Canal. The first water we passed on the right became known as “Not It”. What we were waiting for, “It” was the first place you can see the canal along Hwy 101. That was “It” and it meant the cabin was near. My brother Randy and I knew all the landmarks along the road, because the first to see the sign to turn would call “I got it!” and that meant they got to use the little boat first. Driving to the cabin this last week, in 2013, I again had the feeling of returning to my spiritually special place. I thought “I got it!” as the sign came into view.
The cabin itself is simple, two tiny bedrooms, a small kitchen and an open living room and dining area, with a deck that went out over the water. Remember that this story has three daughters. As we entered the cabin the first time my mother shows me the bedroom to the left, that is Aunty Ta Ta’s room (eldest); the bedroom to the right, that’s Aunty Trudy’s room (middle daughter); and my room is right here! My mother proudly points to the space between Trudy’s room and a small bathroom, big enough for a double bed. Anyone who needed to get into the one small bathroom had to go right past the bed. That is the birth order of the girls, Ta Ta, whose real name is Catherine, I am named after her, Trudy and my mother, the baby of the family. I think the arrangement is perfect.
This arrangement of rooms remains today, even though all three sisters have passed over. So the ownership of the cabin has gone from the three sisters, to two daughters each in Ta Ta’s and Trudy’s families, and four siblings sharing our mother’s third. That is eight owners. All decisions and money issues around the cabin are decided by the “Rule of Three”, weeks are shared by threes, money is shared by threes, and decisions are all made by the Rule of Three. Things get done when it is necessary, eight owners have different ideas about what is important, or worth money and time so it boils down to one of us finally just doing it. Everyone is usually pleased by changes and upgrades, unless they are not, but anyway it goes, we work it out.
The thing that everyone agrees upon is that Granny’s Pad is our special place. In a small cove with a group of cabins all in a row, ours is right on the water. The tide comes in and out, lapping against the bulkhead, surrounding three sides of the cabin. In the winter, my favorite time to be at the cabin, the high tides used to completely surround the cabin, forcing us to park our cars up on the Highway and wade in. I remember those flooded days as so still, not a sound or wave spoiled the expanse of water that spread past the cabin, up to the little road and across to the stream. Salt water meets fresh. Those floods don’t happen as often anymore, some remedies have been made, very technical, a large berm of gravel now sits in front of the stream, keeping the stream and the canal from the great conjoining.
I had my first romance at the canal, the handsome young Shannon whose family had a cabin in the next row; I learned to ski and swim really well, my father taught me how to eat raw oysters and make a bonfire. He used to say if anything ever happened, like the Big One, we were to try hard to get the cabin. At the cabin we would be safe. At the cabin, nothing not even an atom bomb could hurt us. I still carry that feeling of feeling safe and protected when I am at the cabin. My father told me I would be safe there, and I believe him.
Those where the days of no sunscreen, so we all stayed sunburned from June until school started. I took several boyfriends to the cabin, but one stuck around. Chuck became my husband, and I think he really married me for the cabin. Time goes so fast, soon we started bringing our baby girls, Sarah and Heather, who along with their cousins, all grew up combing the beach for all the treasures we could find. Giant moon snails, ghost shrimp, there never ending generations of tiny crabs. Now my daughters are grown and their children are enjoying the cabin.
Last week, in the middle of a rainy March the children played out on the beach, back in the forest and at the small bridge they call the “Troll Bridge”. They went through several changes of clothes in a few hours and then joined us in the steamed up cabin, table set for dinner and plates piled with fried oysters and steamed clams. Our grandson Oliver takes great pleasure in dissecting his clams as he eats. What’s that part Grandpa? That is the clam’s stomach. What is that green inside there?; as he opens the stomach up on his plate. That is the food he was eating, grandpa responds, not even glancing at Oliver’s plate. Oh, that’s cool, and he eats the clam bits.
I felt something hard as I bit into an oyster. I pull it out, and there in my hand is a perfectly round tiny pearl. I take a second and just sit in amazement as the canal once more reminds me of life, and the endurance of family, the resilience of the body. Oliver now has the pearl in his “special area”, really an altar on his top bunk. All his special things, Legos, rocks, shells, transformers, all the things a young boy holds dear.
Several years ago my friend, Dr. Seji Iwata was visiting from Japan. I drove him out to the Canal; we saw eagles and elk along the Hama Hama River then went to the cabin for oysters and sake on the deck. It was freezing cold, the tide was out. I began picking up oysters from the shore. Once he realized that the “rocks” I was picking up were oysters he began gathering large handfuls. We simply opened the oysters and ate them raw, with a drink of very cold sake. A moment of being with a good friend, the tastes of the sake and oysters and the sun that day is one I picture often as my version of heaven.
Both winter and then early spring brings an amazing array of shorebirds, eagles, gulls, seals and sea lions. Occasionally whales swim by. On a sunny January I find myself snuggly wrapped in blanket on the deck, a cup of coffee warming my hands. I lay still on the recliner and just breathe. Cool air, warm sun. I can hear the sounds of the birds that I love so much. I have both giant and pocket size binoculars, and a spotting scope. I document in my bird book then bird, the date and location. Most of my shorebird entries say Granny’s Pad. Lying in the sun, eyes closed, I repeat my list:
Bufflehead; Golden Eye; Barrow’s Golden Eye; Common Merganser; American Wiggin; Eurasian Wiggin; Red eye Grebe; Grebes in dancing courtship; Cormorant; Cormorant with wings spread to dry; Blue Herron; Eagle; crying immature eagle receiving a fishing lesson; Eagles courting; King Fisher; Surf Scotter; Mallard; Common Loon; Loons courting.
This is the place, at the cabin of the three sisters, in the place of romance and parties, of children and grandchildren; being warm on the deck; the water lapping; walks in the woods, of crisp cold oysters and sake on the deck in January, driving in late on a snowy night and needing to turn the electricity and heat on quickly, I say, "it's freezing in here!". My bird prayer repeating; all of these memories fill my mind during the times that I am in pain, or preparing for surgery, or having yet another round of procedures that hurt so bad they don’t even try to lie by saying “just a poke”.
Bufflehead; Golden Eye; Barrow’s Golden Eye; Common Merganser; American Wiggin; Eurasian Wiggin; Red eye Grebe; Grebes in dancing courtship; Cormorant; Cormorant with wings spread to dry; Blue hereon; Eagle; crying immature eagle receiving a fishing lesson; Eagles courting; King Fisher; Surf Scotter; Mallard; Common Loon; Loons courting.
My story is of the Canal, the memories of being there with friends and family, seasons passing, my bird chant, life itself is stronger than any pain, procedure or medical condition I endure. I know who I am, I am Lula’s granddaughter, whose youngest daughter is Margie; and I am her daughter. I have a cabin, a small tiny bit of heaven on Hood Canal, and it sustains me.
Life keeps happening, even when you are dying. And yes, I know we are all dying, but when you have a disease that has an UP TO NOW 0% survival rate it just seems to me that I get to say it with a bit more pizazz. I am hoping that those of you who are reading this really understand that I have no intention of dying, well maybe at 99, after a really big party where we will rock out to Queen, Little Feat, Lady Ga Ga and whoever else might rock my rocking chair.
I still have all the symptoms I have had, but I am really sick of being sick and have decided to rejoin the living for as long and as well as I can. To this end I am coming off of medical leave as a Practitioner and have joined the Council of CSL Olympia in charge of Ecclesiastical Affairs. The Practitioners are all a part of the Ecclesiastical leadership of the Center, an important role as we begin our “open pulpit” process, as we search for our new Minister.
And I am going to Hawaii in May for a week. I have no idea how this will work. When I first got sick my idea was that when things got really bad I would go to Hawaii and just follow one beautiful colorful fish after another into the great beyond. After speaking about this plan my family has some concerns about me going. I have made a solemn vow that when and if I ever get to the point that I am done, I will let them all know, so this trip is not something for them to worry about in that regard.
My concerns about the trip are more around the going on the plane by myself from Seattle to Kona without a major mishap, getting in (and out, remember my solemn vow) of the water; and just putting on a swimming suit (dressing myself can be somewhat of a challenge) and the whole bathroom thing.
Luckily I am traveling with a dear friend who loves me unconditionally and who has already experienced traveling with me. I know whatever happens, even if I have to just hang out and eat tropical fruit in the amazing house she has found in my favorite part of the Big Island, Hawi, so be it. Life is very good.
All of this sounds like I am alive and kickin’, but there are a few exceptions. I am unfortunately moving into the next phase of bad bladder issues and I am scheduled for more fun with my urologist. Let me just say that Botox apparently has many uses besides frown lines, and I am about to experience an alternate use.
MSA is a weird disease that does not follow a clear course, and with my main symptoms being autonomic nervous system that really means all bets are off. Everything that is automatic in the body can be affected, stem to stern. Today it is the stern that is causing me troubles, well, plus the walking thing, but I can use my wonderful Luggie roller to go pretty much anyplace but up steep hills. And thanks to my husband Chuck I get a great push now and then. The point is, I keep going.
So I am still sick, but I really, really want to be well. When I have a good day I will agree to anything. Bad days are just that, bad. My choice is to really live big on the good days, knowing bad days will possibly come, but I don’t want to preplan for those. I go for as much as I can, knowing that I am surrounded by those who love and support me and who also know I can have a bad day now and then.
My guess is that everyone goes through something similar to this. So whatever your thing is that causes you to feel like you need to hold back on your good days, knowing a bad day could come, this is my advice: RISK IT. Risk everyday; say yes to things that scare you and say yes to things that could end up potentially break your heart. If you do not live like this you really can say you are dying.
Welcome to my blog. Here I will write about all things Cathy.