Friday, July 27, 2012

It's Summer! (7/27/12)

The Boost Tracer head mouse ended up not being a good fit for me, because it requires really big head and neck movements to get the mouse pointer from one end of my laptop screen to the other. I looked at the troubleshooting section of the user manual, which recommended that I turn up the speed and sensitivity of my laptop's touch pad mouse. I already had those settings optimized.

Back in March I applied to the Gwendolyn Strong Foundation's Project Mariposa technology grant program. The Gwendolyn Strong Foundation raises awareness about Spinal Muscular Atrophy (SMA), as well as funds for researchers working on therapies. The Foundation was started by Bill and Victoria Strong, parents to Gwendolyn Strong. Gwendolyn has SMA type 1.

Project Mariposa has most recently put on a campaign "50 iPads in 50 weeks". They have been granting iPads to individuals with SMA. On June 8th I received an email letting me know that I'd been selected as a recipient of an iPad!

Saturday, April 28, 2012

Here's a pic of the Boost Tracer visor

Set-up of the Tracer was very simple. What an awesome device!

My 35th Bday...and Other Things

My 35th birthday was on Saturday, the 21st. I was excited to turn 35. My mom and I had gotten the foster home owner's approval for me to have a few bites of angel food cake that day, so my mom got a small cake from a local bakery. Early Saturday morning my mom asked if I'd like my two local aunts to join the cake-eating. I did, so I called them both and extended the invitation. One of the aunts, my mom's oldest sister, has a daughter [my cousin]. My cousin unexpectedly had the day off from work, so she came, too.

The description of the cake we had really deserves a paragraph all its own. So here it is. Apparently my mom told the baker about my dietary restrictions. It was a good thing she did, because the cake had a very subtle sweetness that said 'dessert', without being at all cloying. Mehri, the owner of the bakery, did an excellent job with the glaze that topped the cake. It was a lemon glaze, sweetened only with honey. The glaze smelled fragrantly of lemon, and had a pleasing flavor profile of tartness and sweet.

I've been wanting some art supplies for coloring and drawing. Painting was a lot of fun, but was too fatiguing, and had more mess and set up/clean up than I wanted to deal with. I've done a lot of coloring in the past. During one especially stressful hospital admission, I was introduced to coloring mandalas by an art therapist. It does not have to be a mandala that one colors in, draws or paints. But the work needs to be intricate enough that you are concentrating on your manipulation of the marker [or whatever tool]. What happens is that you begin to be drawn in by the colors. Without being consciously aware of it, your internal self-chatter and thoughts are very much quietened, or temporarily silenced. I've found mandala coloring to be a valuable reprieve from stress. I couldn't say that I'm extremely stressed out at the present time. But my days seem to be, for the greater part, slept away. I wake up for food, care and other essential tasks and go back to sleep. So I thought, coloring mandalas would be an activity that I could work at for a while, even just 5 minutes if I was tired, and it'd be easy to come back to later. Sometimes I even find coloring to be invigorating. I think it's the interaction with colors.

So I've been saving up, and Friday night, the 20th, I placed an order on Amazon for some colored pencils, colored markers, a pack of colored Sharpies, some metallic colored gel pens, a small box of pastels, crayons, a nice pad [Strathmore 400] of drawing paper, and several mandala coloring books. I ordered a plastic toolbox to store the supplies in, a couple of the 'Black Pearl' erasers for the colored pencils, a Staedtler sharpener for same, a protractor for creating my own mandala designs, some zippered mesh bags for storing the different sets of markers and pens separately and some tape for holding my paper in place as I'm working. I actually received a lovely gift bag full of art supplies for drawing from the owners and caregivers here at Hillcrest [my foster home]. So I've been designing my own note cards for 'thank yous'.

Shifting gears, I saw my endocrinologist in November or December 2011. She suggested that taking a low dose of Testosterone might help me in several different ways. Testosterone can help with increasing one's metabolism, encouraging the growth of new muscle, promoting a sense of well-being, increasing my strength, helping to regulate the sleep-wake cycle and providing greater stamina. I experienced these hoped-for effects when I took Testosterone via an intramuscular [IM] injection 2004-2005. Because State policy regarding which medical procedures cannot be done in the foster home setting includes IM injections, my PCP and Endocrinologist had to put their heads together about finding another route of administration. That was the easy part, since there are Testosterone gels, patches and buccal tablets readily available. The biggest issue was cost and insurance coverage. The cheapest method of administration is the IM shot. Everything else is pretty astronomically expensive. [About $300 for a month of treatment.] In 04-05 I paid for the Testosterone shots out of pocket, and it cost about $40 [including shipping] for roughly 4 months of treatment. I was living independently in my own apartment at that time, and was able to self-administer the injections. Anyway, my doctors filed a request for prior authorization of gel treatment with my insurance. Back came a letter of denial. So they filed an appeal stating that intramuscular injections are contraindicated due to my muscle-wasting condition [Spinal Muscular Atrophy]. That was satisfactory reasoning for my insurance, and they are covering the Testosterone gel. I rub in 2 squirts of it once per day at noon. The caregivers are all female, so they have to treat the gel as a bio-hazard. They put on gloves and apply 2 squirts to my belly. I rub it into about a 4-inch square area, and fan it until it's dry. It leaves a light white residue. Then I wash and dry my hands. I'm most hoping that the Testosterone will help my chronic fatigue/dragged-out feeling. April 28th will mark 2 weeks of treatment.

The chronic fatigue I'm talking about is not Chronic Fatigue Syndrome. Lots of people with neuromuscular diseases have chronic feelings of fatigue and weakness. One drug that can mitigate this symptom is Mestinon, AKA Pyridostigmine Bromide. “Mestinon is an orally active cholinesterase inhibitor. It prevents the breakdown of acetylcholine (pronounced "a cee til coline") by allowing more acetylcholine to accumulate. Acetylcholine is the chemical that sends nerve impulses to the muscle. With more acetylcholine, there is more control of voluntary functions such as eye movements, limited strength, swallowing and breathing.” [quoted from] One of the women in a Spinal Muscular Atrophy support group I belong to on Facebook takes this drug. She describes the effect of taking it as getting into a swimming pool, and having some of your 'drag' or weight counter-acted by the water's buoyancy. She described the experience of it wearing off as trying to climb out of a swimming pool, and having to take on the effects of standard gravity again. She made a video about her use of Mestinon. Here's the link.

The best way I can objectively gauge my fatigue is via tracking my activities, and what I've felt up to doing. As well, I can keep an eye on what accommodations I need to make for myself. What I mean by accommodations is what small things I need to do to stay moderately comfortable when doing activities. Lately I have had burning pain in my neck if I'm upright past an hour, or so. I'm familiar with the burning sensation, having felt it in other muscles. In my body it signals fatigue in and/or over-use of the muscle. So I've been rolling up a small lap blanket, and placing it behind my neck to provide some mild support. Sometimes I wear the blanket length-wise, like a scarf, for lateral support.

If I'm laying back against the bed, it's hard to reach the keyboard on my laptop. I -can- reach it, but it means holding my fully extended arm out. And that's not a motor activity I can sustain very long, at all. So the days I'm really tired, too tired to set up for dictating with Dragon NaturallySpeaking, I've been using an onscreen keyboard. I've trialled a few of them, including a text-entry product called Dasher. The Dasher website explains the experience of using it thus: “ Dasher is a zooming interface. You point where you want to go, and the display zooms in wherever you point. The world into which you are zooming is painted with letters, so that any point you zoom in on corresponds to a piece of text. The more you zoom in, the longer the piece of text you have written. You choose what you write by choosing where to zoom.” [quoted from] I've tried using Dasher 3-4 times, or so. At first, I found it very tricky and dizzy-making. I found much better success when I radically reduced the speed at which the letters zoom past me. The program comes set at a speed of 8. I started at 1.90, and am now comfortable at 4. Dasher can 'speak' whatever string of text one produces with it, as well.

Speaking of assistive technology, I applied for a grant through about 2 weeks ago. “Computer tools designed specifically for those with severe physical disabilities allow for increased self-reliance and a vastly enhanced computing and Internet experience. GiveTech's goal is to provide such technological tools to those in need. GiveTech does not give away computers; rather we give away input devices that allow people with quadriplegia to use computers. ” [quoted from the GiveTech website given above] Although I don't feel that the word 'severe' is particularly helpful in describing my disabilities, the technology that GiveTech offers could greatly empower me. A few days ago I got an unexpected package in the mail. GiveTech had sent me a gyroscopically-controlled head mouse called The Boost Tracer, by Boost Technology. Here's the website. I read the instruction manual today, and am letting the battery charge up now. It needs a 14-hour charge before the Tracer can be installed. Tomorrow morning, well it's already this morning [2:12 am], the battery will have had its long charge by the time my morning care is complete.

Even though I tend to feel fatigued all the time, I now have quite a lot of tools to make things easier on the computer, and to have fun with art. I'm extremely grateful for my life and the opportunities it provides each day.

Wednesday, April 11, 2012


I spend a lot of time thinking. I haven't shared much of what I've been thinking about lately though, because I've been extremely fatigued. I've been sleeping more hours out of the 24 than not, and not feeling refreshed when I wake up. I've been trying to think of a way to describe this fatigue I feel all the time and the best expression I've come up with is "weak as a kitten".

I decided I didn't want to remain silent in terms of writing any longer, so the other day I reinstalled Dragon NaturallySpeaking on my laptop. I lost the installation when my hard drive fried this past August. But other things have been going on with my body beyond the fatigue. I've noticed subtle changes in my speech and breathing. So I was a little concerned that I was not going to be able to use the dictation software. I'm dictating this post via Dragon, and it seems to be recognizing me okay. During Dragon's training phase, I purposefully spoke in a weak voice.

My caregivers use a pulse ox to check my oxygen saturation twice a day, and the results are always satisfactory. However, when one has a neuromuscular disease, oxygen saturation isn't the only number one has to keep an eye on. I've been having symptoms that indicate my old friend carbon dioxide retention may be back again. The chronic sleepiness and grogginess, very poor short-term memory and headaches commonly go along with hypoventilation. One might ask how one can hypoventilate when one uses a ventilator 24/7. I'm not exactly sure. All I know is that I used to be completely comfortable breathing on the vent. Now I seem to have a nagging anxiety or consciousness that my breathing isn't exactly adequate. I find myself trying to take more spontaneous breaths, and realizing that this has gotten harder to do so. I see my pulmonologist every 3 to 6 months. He seems to think that since I do not have frequent respiratory infections things are okay. The last time I saw him he reminded me that my tidal volume is much bigger than it typically would be for someone my height. FYI, all of my friends who use vents have their tidal volumes set way higher, too.

Along with these changes in my breathing, I've noticed a change in my ability to cough and clear my secretions. It's kind of worrisome, because I know that respiratory infections can happen quickly when one isn't able to clear their lungs. I do have some techniques available to me for airway clearance, including use of my Cough Assist machine and good old tracheal suctioning. The cough machine weighs probably over 20 pounds. It's big and awkward to move. I think it would be really good for me to use it, though. Not only would it help me get rid of lung secretions, but it would give my lungs a gentle stretch. Because I'm not able to take deep breaths, a condition can build up in the lungs called atelectasis. This is basically a buildup of old secretions deep in the lungs, in areas that never get stretched. My chest x-rays always show this.

I think suctioning would be a lot easier to start implementing, but it is not an ideal solution. Whenever you introduce the suction catheter into the trachea, you also introduce germs even if the caregiver uses excellent technique. The act of suctioning itself can be very irritating to the tissues of the airway, and this can set up a vicious cycle of causing more secretions. I'm not sure what I will do, but I can tell you that the sensations that come from weak breathing and lung secretions you can't get rid of no matter how hard you cough are unnerving and frustrating.

As far as I can tell, the intelligibility of my speech is unchanged. I asked my mom a few days ago if she has noticed any change in the quality of my speech. She said that it seems to have gotten quieter and hoarse. I've noticed these things too, but also that the driving force of my speech, my breath support, has weakened.

I've been living with the diagnosis of Spinal Muscular Atrophy Type II since 2000. This disease is described in medical literature as chiefly featuring progressive weakness and muscular atrophy, and that has certainly been my experience. So I guess it should not come as a surprise when my motor functions continue to deteriorate. But it does. After I started using my first powerchair, I had hoped that I would retain my ability to walk indoors. After I got my trach, I'd hoped the progression would stop there. But it didn't. I lost the ability to to walk, to take steps, to stand up, to transfer myself.

Since there's nothing I can do to get back abilities I've lost, or to prevent the loss of function in the future, the only thing I can do is to accept the reality of my situation. I rarely feel sad or angry about having SMA, because I don't find those emotions to be helpful or productive. I will admit to feeling a little wistful right now, though.

Wednesday, February 15, 2012


Our culture is obsessed with and sensationalizes virginity. By definition, something becomes sensationalized when it isn't the norm.

Just two examples of this are the movie "The 40 Year Old Virgin" and the TV show on the TLC Network called "Virgin Diaries". I'm watching an episode of the former as I write. The people on the show aren't all waiting until marriage to have sex. Some have never had the opportunity. Some of the folks seem willing to jump the nearest available bones but are very socially inept.

One couple waited until they were married to kiss and share further intimacy. The show filmed their wedding and the reception that followed. They weren't at all delicate about their first kiss. I think one's wedding should involve the actions and customs that will set it off as the very special and life-changing event it is. For me, though, the first kiss the couple shared belonged in a private setting. It was exceedingly obvious that they had been hankering for that kiss. I don't think a cold peck is called for in response to “you may now kiss your bride”. But prolonged tonsil-sucking seems out of place.

The show followed several individuals who went out on dates. When they revealed that they were 'still' virgins, the people that they were spending time with acted totally shocked and nonplussed. Someone who is in their 20's, 30's and beyond who hasn't had sex yet is viewed as an oddity by many, perhaps even most people who live to the norms of popular culture. I'm both amused and chagrined by popular culture's sensationalization of 'extended' virginity.

Wikipedia's entry for "The 40 Year-Old Virgin":

"Virgin Diaries" on TLC:

Sunday, February 05, 2012

Thoughts early on Christmas morning 2011

I spent last evening and night watching the movie “A Christmas Story” and the first season of “ER”. The first is a Christmas Eve tradition, stemming from December of 2005, when I watched it several times in a row whilst recovering in ICU from surgery to create my tracheostomy. I occasionally watch “ER” because of the unintended medical bloopers that crop up, but also because it reminds me of many situations I've been in, medically speaking.

Some might think it strange to revisit past trauma. It's important for me to do so every now and then for two reasons. First, I'm reminded of vital lessons I've learned in surviving these experiences. For example, when I became critically ill with Pneumonia in December 2005, I was extremely over-extended in my commitments. I was very depressed and neglected the care of my body. I was complacent and in denial about how sick I was becoming. I lacked the ability to see the positive things that populated my life.

The second reason I sometimes watch or listen to media that is potentially triggering is that my reality consists of continued interaction with the medical community, and sometimes in ways that are invasive and/or re-traumatizing. I think a good definition of trauma is something which overwhelmingly shocks the system. Trauma is not only a theoretical concept, but one which is borne out in one's physiology. When trauma is activated, turned on or awakened I have symptoms such as pounding of my heart, flushing of my face or neck, emotional distress such as crying and/or dissociation, feeling faint, body and jaw trembling. These signs mean I've been overwhelmed in a situation that is beyond my control. I have found that it's possible to dip my toes into that which triggers me without being deluged in symptoms.

Why would that be worthwhile? Because some trauma theorists think that exposure therapy, or taking in small doses of traumatic material in a controlled environment can gradually begin to lesson the shock effect that such material has on one's body and mind. I definitely still have my moments of being overwhelmed when I'm in a medical environment. But that is a big improvement over being overwhelmed by just thinking about things that trigger me. I used to be bothered by repetitive intrusive thoughts of past traumatic events and feelings of intense revulsion and horror about these events. I'm much more at peace now.

Today marks 6 years since I got my trach. I can remember wondering when it was first placed, if I'd ever be comfortable in this newly high-tech and high-maintenance body. Today I am comfortable. Now there is but a tiny acknowledgment that I need this tube to live. There are only a finite number of issues that can go wrong. Simple twice daily care, that takes about 2 minutes each time, keeps my stoma healthy and prevents most problems.

Starting in September of this year, I have my trach changes done every 3 months, whilst I'm under a general anesthetic. Doing the changes this way is almost physically painless. I'm certainly unaware of pain while I'm anesthetized. In fact I'm apparently so relaxed that the tube slides in easily. I don't feel much pain in the hours and days afterward, either. When I'd have the trach changes awake, in the ENT's office, my throat would ache severely for up to a couple weeks, and I'd wince with every swallow.

Having my trach changed in the operating room is quite a lot more expensive, not only financially, but also in terms of time. I usually arrive to the day surgery unit around 5:30 AM. It takes about 2 hours to be admitted, get changed into a gown, answer all the health history and current medication questions and get my already accessed portacath hooked to a bag of IV fluid. Hydrocortisone is given as well, because I have Adrenal Insufficiency. A simplistic explanation of this condition is that one's body produces certain substances during times of stress [such as being sick, injured, having surgery or being anesthetized]. My body lacks the ability to produce these chemicals. If I didn't replace them with the hydrocortisone, I could go into shock, become comatose and die.

After I'm admitted, have gotten my gown and ID bracelet on and have signed the consent form, there's typically a short waiting period until I go for my procedure. I usually arrive to the day stay unit having been told that I'm the first or whichever case for that day. But depending on how fast patients are ready for surgery, or perhaps on how late the doctors are running I may go in earlier or later than expected.

During this time both the resident and attending anesthesiologists will stop by and formulate a plan with me on how anesthesia will be induced. I always state clearly that I want to go to sleep via medication run through my IV. When I was a pediatric patient, I was put to sleep with gas. This was terrifying for me. I'd struggle and scream while the OR staff held me down and forced the big black mask over my face. To this day, any smell even slightly reminiscent of that sickening gas sets off an instant panic in me.

I'm an old hand at having surgeries, to the point that I stopped counting after the number reached the thirties. Even so I'm usually nervous. I'm not troubled by specific fears like waking up mid procedure. I think it's that my body has been conditioned to enter a hyper-vigilant state in the pre-op environment. There have been plenty of times when I've accompanied a friend or family member while they were waiting for their surgery. I felt the exact same jittery nervousness then.

My mom meets me at the day surgery unit, usually a few minutes after I arrive. She and I chat until it's my turn in one of the OR suites. She kisses me goodbye and tells me that she'll see me after I'm out of recovery.

When I'm being wheeled from the pre-op area to the OR, we pass through big double doors. The environments on either side of the doors are very different. Past the doors, the air suddenly has a chill. This is now strictly a working medical zone, and I know I'm just seconds away from entering the operating room. ORs aren't comforting, at all. They are solely utilitarian, and that scares me. I've had so many experiences throughout my life of just being a body manipulated under the cold and iron will of surgeons or other doctors. Being doctored without compassion and empathy is torture. I know healthcare providers need to maintain a decorum of professional detachment. And I accept that some treatments may cause me pain. But I have an acutely-honed sense of when I'm being regarded as a person or just the flaccid trachea in room 39.

Health is: ___. [ Written by me in March 2007]

I have been asked to write a response to the statement “health is: ________”.

The traditional characterization of health seems to be some arbitrarily defined state of body and mind, from which all forms of disability are notably absent. I define health as a state of balance, having adequate resources to meet the needs of your body, mind, and spirit.

Today and yesterday, and many weeks before, I have felt unhealthy. This sensation of lacking health is not directly caused by my use of a power wheelchair and ventilator. Instead, I feel unhealthy because I lack adequate resources. I don’t have a place to live where my body, mind, and spirit can be holistically cared for. I don’t have a means for enriching and regular recreation outside my home. I don’t have the resources at this time to complete my long-term goal of graduating as a Bachelor of Arts.

For me, health is having a place to live where my body can receive safe, reliable, and comfortable care; where I have safe space to express all facets of my humanity, including artistic creativity, anger, sadness, and sexuality without being labeled a behavioral problem. Health is authoring my life, having both freedom to make choices for myself as well as the supports I need to care for myself.

Thursday, December 08, 2011

thinking about etymology

I've been thinking lately about how words relate to each other in terms of etymology. The first set of words that got me curious is:

These words all have to do with Christianity. I have found the meaning of the bit 'cate', common to all but the first word. It is from the Greek 'kata', which means down. Catachesis: from the Greek katekhesis, which means instruction by word of mouth, from katekhein, which means to instruct orally, originally to resound (with sense evolution via to sound (something) in someone's ear; to teach by word of mouth. The first word, though, catacombs, is etymologically different than the 3 following words. Because the pronunciation of the first two syllables of all the words is seemingly the same, I casually included catacombs in the list, even though the spelling of those two syllables is different. In fact, catacombs comes from the Late Latin catacumba [-ae plural]. The word catacombe is found in Old French, catacombă in Romanian, catacumba in Spanish, and katakombe in Norwegian. The Latin catacumbae may be derived from a proper name or be a corruption of the phrase 'cata tumbas', which means among the tombs. 


The second set contains only three words. The fact that they come from Biology, which I'm less familiar with than Christianity, may explain that. The set is:

The common bit, 'karyo', is from the Greek 'karyon', which means kernel or nut. A eukaryote is an organism with a kernel, properly called the cell nucleus. A prokaryote has no cell nucleus. The 'pro' part of prokaryote also comes from a Greek word, meaning before. I wonder if another name might be more accurate for an organism which completely lacks a cell nucleus and will never have one. 'Pro' 'karyote' suggests a life stage before the existence of a nucleus. As for the word karyotype, it describes the number and appearance of chromosomes of a cell as seen under a light microscope. The word can also be used as the term for the complete set of chromosomes in a species, or an individual organism.


Friday, November 11, 2011

From 'Bluebird', a guest blogger

My dear friend Max posted this photo on his Facebook page and it struck a chord with me.
I’m a stickler for honesty and have found people respond to it most favorably. Oh, I suppose I should add, the people you want to keep in your life respond in a favorable way. The others just mutter and shuffle off into their dark little world.
Guess one of the difficult things to do is to be truthful when asked how you are doing when, truth be told, you aren’t doing so hot. Maybe the meds didn’t agree with your system, maybe a bill came unexpectedly and you have to choose between necessities and that extra ‘treat’ you had been saving up for.
Perhaps your wheelchair isn’t working and you are house bound or a thousand other things that might ruin your day but my friend Max seems to have conquered that problem of telling the truth when his world is crashing by responding with, “I’m doing really well, thanks”.
I’m doing really well”. I’ve thought about that sentence as it is reassuring to MY ears to hear it. Usually I respond to the “How are you doing?” with an ‘organ recital’ of aches and pains, problems I’m having, why things aren’t honky dory in MY world but how much easier it would be to say, “I’m doing really well” and swallowing before the word “considering” pops out of my mouth.
Now, lest you think my friend Max is a Pollyanna, stiff upper lip, unicorns and glitter and all that stuff, when pressed he will honestly and openly explain that he’s having his teeth pulled, or a new trach tube installed, that the deck hasn’t been completed and he’s unable to use his chair, but these things are casually mentioned, in a matter of fact way rather than in a complaining or whining way. No, Max ‘calls it as he sees it’ and he sees his life as “Doing really well, thanks”.
I learn so much from Max about ‘keeping on the sunny side’ of life.
Friday November 4, 2011

Friday, August 12, 2011

a hard lesson...

The owners of my foster home have been working everyday on the deck. I thought it would be a simple linear progression from the deck repairs being done to getting in my chair and experiencing a bit of locomotive freedom. I have been dreaming, literally, of the day when I get in my powerchair and move around a bit. Almost every night I dream of exploring cities and neighborhoods in my chair. I dream of pushing cross-walk buttons, crossing streets, deciding which store I want to go into. These are simple and mundane things for some people. Not for me. Freedom of movement is something I fantasize about. And this tempted me down the path of the fool.

Before I moved into this foster home, in October of 2010, the person who runs the care here was very clear that she didn’t take anyone who used a powerchair. That wasn’t a problem. At the time I was extremely weak, chronically sick with fevers and respiratory infections and was nowhere near the shape to think about getting up in my chair. After I moved here, my physical condition slowly improved with the radical improvement in the quality of care I was receiving. I started needing much less medication to manage my pain. I don’t know if some strength returned to me, or the pain meds were no longer making me so weak. In any case I began to experiment with trying to sit up on my own. One night, out of the blue, I had the thought, “I bet I can sit up on my own.” It was a sweaty, gasping and dizzy-making effort. But I could do it. This gave me a lot of hope, and the impetus to keep searching-out and strengthening my physical abilities.

Fast-forward a few months. I heard from one of the caregivers sometime in July that a load of lumber had been delivered to the house. Very shortly, the owners began replacing the rotten boards with new ones. Things seemed to be happened quickly with the deck, and I got very excited that my dream of getting in my powerchair might be able to happen soon.
What I completely lost sight of in my drive to make my desires come to fruition was that the owners of this foster home are senior citizens with health problems. So even if it looked like the deck was coming along very quickly, in fact there was much more involved than just putting some new planks in. They had to paint some parts of it and stain others.

I had been storing my powerchair in my room since the modifications on it were complete in January or February of this year. I maintain the batteries by completely charging them once a month for 24 hours. In the first few days of July I asked my mom for help with the usual monthly charging. The chair wouldn’t turn on, which is necessary to start the charging process. So I called the repair shop and arranged for them to call me on August 1st about picking up my chair.

The person who manages the care in this house has told me that I needed to give the house prior notice for anything which would require action or participation on her part. August 1st came, and the repair shop came to pick up my powerchair without contacting me.

This isn’t an excuse, a justification, a rationalization on my part. But ever since July 25th, when I had my trach changed, I’ve had a great deal many more PTSD symptoms than usual. Not so much now, but the last 2 or so weeks, I’ve had a lot of memory lapses, sleep disturbances and episodes of intense emotional distress. I forgot to tell the care manager that my chair was going to be picked up. She was very angry, and told me that when the repairs on my powerchair are done, it’s not to come back to this house. After a day or two, she compromised. My mom is temporarily storing my chair at her house. I’m not certain, but maybe the chair can come back again after all the work on the deck is finished.

My life lived from bed isn’t unhappy, unfulfilling or necessarily deficient. I guess I looked from my world to the world of those who locomote and saw the glimmerings of a bridge between them in the fact that I was doing and feeling so much better, health-wise. My goal isn’t to be up in my powerchair all day every day. My hope is to add some options to my life. I’d really like to have the ability to occasionally go outside and sit in the sun for a bit or go for a short walk. Perhaps even on very rare occasions to go on a community outing.  

I think I saw the seemingly massive gap between my life in bed, and my goal of being able to go out in my chair, and panicked. I fear it will never happen. I fear I’ll always live in this one room. The life I live seems so estranged from normality. The reality is that it is normal…for me. What is this hard lesson I have learned? Just because I want something very much doesn’t mean I can over-look the needs and well-being of my fellow humans in my efforts to attain it.

If it works out, I’ll be taking a fully online class from PSU in Fall Term. I have time and a bit more stamina than I used to. It makes sense to me to continue my journey of learning.

Sunday, July 31, 2011

a bit overwhelmed...

The past few days I’ve been in a mode of being still and watching life whirl by. I have things calling for my action and attention but, for the most part, I’ve not been responsive. I feel anchored, in body and mind, to my trach change on July 25th. It was intensely painful in the moment to my body. My psyche seems wounded now, as well. The overwhelming emotion I feel is massive sadness. I’m not just sad that this was a difficult trach change. I have chronic PTSD, and I have always felt wounded by that. This wounding has been re-awakened or triggered. Most of the time I’m not so acutely aware of how much it hurts, but now this pain has come to the surface.

Most of my trach changes are unpleasant, painful and mildly to moderately triggering. This time was much worse.

Wednesday, July 20, 2011


I have an appointment with my ENT doc to change my trach tube next week. People with trachs have their tubes changed with varying frequency. I usually have mine changed about every 2 months. The tubes need to be swapped out for a fresh one every so often, because bacteria and secretions tend to build up. Many folks change their tubes at home with no trouble. I have my ENT doc do it, because my tube changes are painful and traumatic for me, and I feel that he does the best job of it. It’s easier to change a cuffless trach tube. It tends to slide in and out of the stoma with no or minor discomfort. Cuffed tubes have a balloon around the outside of the tube. When the tube is inserted into the stoma [trach hole in throat] the balloon is deflated, but it still adds significantly to the tube’s diameter. This means the tubes stretch my stoma just a bit as they are changed. The doctor has to use a lot of pressure when he pushes a new tube in. Forcing and forcing, and finally it slides in with a painful pop. I try to relax, as tensing up just makes it more difficult to insert. 

Having my trach tube changed creates severe anxiety in me because I know it hurts, and also because I have to temporarily be off the ventilator and oxygen. I feel very insecure without the tube and vent. The trach tube secures my airway, guaranteeing I can breathe. Without the tube in place, my airway [trachea] is very floppy/flaccid and may collapse shut. I can take breaths on my own, but not well or easily.  The sensations I feel as the old tube is pulled out, and the new one is pushed in often trigger flashbacks of an incident that happened to me in 2005. I was diagnosed with lower motor neuron disease [a progressive neuromuscular condition] in 2000. This disease has been very gradually atrophying my voluntary muscles, including the ones you need to breathe and cough effectively. In December of 2005 I became very sick with pneumonia. Because I couldn’t cough well, the secretions built up and up until I was literally drowning. I ended up coding in the ER, was intubated with an endotracheal tube, put on a ventilator and sent to ICU. One day a nurse turned me too fast. This prompted an intense paroxysm of coughing, and my endotracheal tube came up. I needed to quickly be re-intubated. Intubation is a horrifyingly uncomfortable [understatement] and traumatizing experience for someone who isn’t sufficiently sedated. That’s what happened to me. They injected Versed into my central line. Either it wasn’t enough, or they didn’t wait for it to take full effect. I wrote about my memories of this incident. Here is what I had to say:

I don't remember the moments before I was accidentally extubated at Adventist. I don't remember being unable to breathe or panicking. I only remember my body at sudden violent war as they were trying to put the tube back in. I remember different parts reacting in different ways. It was broken down into segments. One part was focusing on the sensations of the laryngoscope. It was cold. It was heavy. It was metal. It forced its way where my body did not want to let it go. But it went. Because that is its job. One part focused on the mouth and what happened there. The tongue tried to help. It got in the way repeatedly, tried to stop them. The lips hurt because they were being stretched by hands that didn't care about comfort. The teeth hated the laryngoscope because it bumped and grinded on them, and twisted through the mouth without regard for them. The throat is shy. As noxious as the stimuli to my mouth were, the throat fared 1000 times worse. Because the throat lost. The tube won, the people putting the tube won, and the throat lost. But air is blessed. And as much as I hated my body for losing the fight, and the people and the tube for winning, I was breathing again, and that is necessary.  At this moment, in writing about it, I am choosing to suppress emotions about it, and let the senses communicate. If I begin to feel anything, it's a shuddering revulsion.