Appointments, Pennies, and Water Skis on Fire

I've been meaning to discuss the last specialist appointments I had this year for awhile now. 2015 was another year on the Hamster Wheel of Diagnosis and I’m headed into year six running on that wheel. I feel like I’m closer to more answers now than I was a year ago for sure, or I’m just getting more comfortable in the grey area. Sometimes it’s hard to tell. I’m going to review a bit the results of those appointments so I can sort it out in my head.

I saw my neurologist at Stanford in early November and it had been about 6 months since I had seen him before that. When I saw him in May, that was probably the worst appointment I’ve ever had at Stanford. He was running behind that day, he gave me a very cursory exam (he didn’t even have me get on the table), he expressed his frustration with my test results and my “subjective” symptoms, and then rushed out 15 mins later. Seriously disappointing. The appointment was such a disappointment that I debated not going to my appointment in November. Going there is becoming more costly and more exhausting. We have to stay in a hotel now and decent hotels in that area don’t exist under $200 a night.

But if you want a diagnosis and treatment and to get off the Hamster Wheel someday, you have to play the game. So I went to this appointment, and I’m glad I did. This appointment was a significant improvement. He had recently lost his nurse he worked with for years (who I had built a good relationship with) and his new PA spent about an hour with us before he came in. I was pleasantly surprised that she had already read extensively about my health history before she came in and she listened patiently as my husband and I described my symptoms. She did a careful neurological exam.

In many ways, getting a neurological exam is similar to a sobriety test (I imagine since I’ve never done one. I’ve never even been drunk). They shine bright lights in your eyes, ask you to walk in a straight line, ask you to touch your nose with your eyes closed, stab your feet with sharp objects and check your nerves, etc. Maybe they don’t do the last one on a sobriety stop. It’s a long process and once my doctor came in we did most of the exam over again. The appointment lasted about 2 hours, which is the longest one I’ve ever had there. I finally got to show him the extent of my mobility issues, weakness, and that my right leg has lost most of its functionality.

They both acknowledged the extent of my mobility issues when I showed them and they said my exam findings matched my “subjective symptoms,” which was a nice turn around from the last appointment. In some ways, for what it’s worth, I felt vindicated.

The last few years I’ve been living with incredible frustration because I felt like my neurologist and some of my other doctors privileged all the inconclusive test results over my voice and my explanation of my own experience. I started to feel like I had no control over the narrative of my own body. I was no longer an authority on my own reality. The constant testing and inconclusive findings have been an impediment to treatment. When I saw him last month, he explained why he has been relying on test results and admitted that the test results would probably never be able to objectively describe my symptoms. I had planned on having a long talk with him at this appointment about the fallibility of test results and then he discussed it with me without me even needing to mention it. 

He said Myasthenia tests can’t find all the antibodies that would identify the disease. It’s rare to find a doctor who will admit to the fallibility of Western medicine in diagnosing and treating rare conditions, and I’m thankful that he finally had this discussion with me. I'm not sure I got an official Myasthenia diagnosis at this appointment, but all of my other doctors are using that assumption.

He also mentioned that my low copper is very troubling. I first saw him way back in 2012 and he tested my copper then and it has always been low, sometimes very very low. Since 2012, I’ve taken copper supplements every day, which you can’t even find in health stores. I have to purchase them online. My results are always low and while I was there, he tested my copper again. Despite upping my daily dosage of copper the last year, I’m still way under the normal range. 

He said that this acquired copper deficiency could be either at the root or at least a major factor in all of my symptoms and that copper deficiency is extremely rare. I kept thinking “Did we find The Cause? Did we finally find Sasquatch?” I guess we’ll have to see if that ultimately is The Cause. I have to see a GI specialist at Stanford to identify why my body won’t absorb copper, which annoyingly is essential for the nervous system to function. 

He noted that my nerves, which are usually less responsive in neurological tests, were hyper responsive this time. He said that should be the opposite with copper deficiency and in an off-hand comment said he would probably discuss me at a conference.  

I've finally leveled up to being a case study. I will be famous for all the wrong reasons.

My best friend Carrie Anne joked with me that at least my diamond and platinum levels are normal. Those would probably be more expensive to treat than copper. If only eating pennies would solve my problem.

Before I left, he set a plan in place for the next few months: see a GI specialist to finally get my copper levels within normal range (and discuss my other GI issues related to autonomic dysfunction), do another brain MRI, do another Single Fiber EMG, and then hopefully start an immunosuppressant and IVIG (standard treatments for Myasthenia that are also very risky). 

When I did a Single Fiber last year, it was the most unpleasant test I’ve ever done. They have to place long needles in your body (each one for 20-30 mins or so) while you flex slightly and move the needles around to get a reading from the muscle fibers. It’s a more sensitive version of a regular EMG and incredibly painful. I was convinced by the end of the test that they had sprained my ankle. Luckily, once all the needles were removed, I was ok. The test took about an hour or more, and when it was over I swore I would never do that again. I also have to stop taking Mestinon to do the test, which is the worst part since I’m dependent on it to breathe.

He is concerned my insurance won’t pay for IVIG unless I do another one. He joked with me that "doctors don't get to treat patients anymore. Insurance companies make all the decisions." Anyone in the trenches of Western medicine will know this to be true. Insurance companies increasingly come between doctors and patients, making the decisions and deciding our fate. Alas, I will enter the torture chamber for another Single Fiber again early next year. We’ll probably have to stay multiple nights because I will likely not be able to make the trip home after being stabbed while not being able to oxygenate properly. Should be a blast!

Some people go on vacations. I drive far away and pay a lot of money to get stabbed repeatedly. 

As we discussed the extent of my mobility issues, he said that neither POTS nor Myasthenia could explain the rapid loss of my mobility and that perhaps I have a “movement disorder as well.” I almost burst into tears at the moment. The prospect of having to get another diagnosis is too much. It’s only a possibility so right now I’m not thinking about it. I'm bookmarking that comment and putting at the back of my mind right now.

The trip to Stanford wiped me out more than any other trip we’ve ever taken there. That trip, which seems so simple, is getting more challenging. But I’ll keep powering through because that’s what I have to do. There’s a Mexican restaurant there that’s right next to our favorite hotel (when we can get a room) and they have the best tortilla soup I’ve ever had. That’s my happy place and motivation.

When I recited everything to my local neurologist who I saw two weeks later, he shook his head as he listened. He said there’s no way that I could have such a mix of incredibly rare conditions (POTS, Myasthenia, Copper deficiency, etc.). He is convinced that there’s a label that would explain everything. I’m sure there is. The problem is I’m not sure that label exists, as well as the diagnostic tools to explain that label as well. I’m starting to wonder if that label will not exist during my lifetime. When I got ill after turning 30, I had never expected to go full unicorn. I never meant to reach such levels of absurdity of being a special snowflake.

I had to get a new local neurologist this year and I really like this new doctor. After we discussed my symptoms and potential treatment plan, he joked with my husband and I about the most absurd new ICD-10 codes used to label medical conditions that went into effect this year, including “Struck by an Orca.” We left the appointment laughing. I found a website where you can buy a book with some of the most hilarious ICD-10 codes in illustrated form. For the spoonies and medical professionals out there, it’d be a great gift. 

Here are a few:

Yes. There's a separate code for the second encounter

How unfortunate does one have to be to quality for this one?

Who hasn't been hurt by falling books or pulling a muscle from focusing too hard while reading at the library?

After my appointment with my local neurologist, I saw my pulmonologist and got to tell her about my summer of desperately seeking oxygenation. July-September I was barely able to breathe and had to use my rescue inhaler (on top of my steroid inhaler I use every day) constantly. Thankfully by the end of October, I’ve been breathing better consistently but still using my rescue inhaler essentially every day. She thinks that when I finally do start immune therapy, I will likely start breathing better since Myasthenia is the culprit. I have to do another pulmonary function test again next year as well, which is also incredibly unpleasant. Husband will at least get to have a good laugh again as I huff out my lungs in a space machine.

So early 2016 is shaping up to be blast with the Single Fiber, another pulmonary function test, and MRI. Let’s throw another Tilt Table Test in just for fun!

Along with other appointments, November wiped me out and I’m still recovering. I’ve had a month now of severe weakness and paralysis from the Myasthenia and had to stop exercising for a time because using the muscles only makes the paralysis worse and then I can’t get around my house. But last week I started being able to go on my very short walks with my trekking poles again and exercising a little.

It seems like every 2-3 months, I have a very bad patch where the weakness and paralysis is so bad that I’m bedridden and can barely move. My last one was in August, so I guess I was due. This time around I tried to be smarter. Usually when it sets in, I start pushing my body even harder to move, which only makes it worse and then I struggle to do important things like brush my hair or bathe. This time I let Myasthenia win for a bit and tried not to push my body (at least not very much) and I wasn’t bedridden much through this one.

It disturbs me this patch has lasted over a month, the longest by far. I’m always afraid that these patches will continue to get longer and I’ll have to start using my wheelchair to get around my house. I’m holding fast to the mobility that I still have. I need a wheelchair most of the time when I leave the house but I can still get around my house without aid much of the time. I want it to at least stay that way. 

Despite the rough patch, I’ve played at the assisted care facility where my lived twice now. Even with the weakness in my upper body, I can usually get my arms and hands to function enough to play. I made it to my husband’s birthday gathering and although I made the huge mistake of not taking breaks during the party, we had a great time. I did some artwork as a gift for a friend. Not bad for being a weak, hot mess.

My BFF and sister in music Melynda and I playing at the care facility for the residents

I’m looking forward to the holiday gatherings the rest of the year.

I canceled almost every appointment this month to conserve energy because being able to participate and see my friends and family this time of year is more important than being on the Hamster Wheel of Diagnosis right now. The Wheel will be waiting for me in January and I’ll begrudgingly get back on, but right now I’m trying to have a life. Or at least pretend for just this brief moment in time.

Right now, that’s enough for me.  

I’m thankful to have the team of doctors I have now. It took a long time, but I found a good team. I had a lot of appointments this year but I was lucky I only did a few tests over the year. I had a long stretch where I didn’t have any appointments, and it was right when my mom was declining, which made dealing with that easier. Fate was looking out for me then.

I’m feeling hopeful that in 2016 I could start a new treatment plan. If I’m doing better, maybe I can get some of my independence back, start driving again, and start thinking beyond that (like working or volunteering). I don’t want to get too far ahead of myself, but I am hopeful. Getting some of my independence back and playing music again are my ultimate goals. 

In many ways, I feel like despite my limitations I need to try to live the fullest life possible not just for myself but for my mother as well—for the life she was denied the last few years. Sometimes, hope is the only thing that is tangible in an uncertain future. In the meantime, as I make the most of life right now and wish for a better tomorrow, that’s what I’m holding fast to. 

My wish for myself, for you, for all of us in the coming year is health, happiness, and continuing to avoid injury by flaming water skis or orca attacks. We deserve that much at least. 

Let's Talk About that Kylie Jenner Image

I want to respond to something that happened this week that I'm still trying to make sense of.

Perhaps you have seen that image above of Kylie Jenner in a wheelchair on the cover of Interview Magazine and heard about the backlash from it. I’m sure like many of you, if I see anyone from the Kardashian clan mentioned in an article I ignore it. I’m convinced every time someone clicks on a Kim Kardashian article, an angel loses its wings. 

Yet, this image irked me. Most people are blaming Kylie, but I honestly doubt she made any conscious choices besides agreeing to pose for the images for profit. It was the choice of those involved at the magazine to use a wheelchair as a prop. She was literally along for the ride. As the backlash to the image began, it’s a comment from a representative from the magazine that irked me the most:

"At Interview, we are proud of our tradition of working with great artists and empowering them to realize their distinct and often bold visions. The Kylie Jenner cover by Steven Klein, which references the British artist Allen Jones, is a part of this tradition, placing Kylie in a variety of positions of power and control and exploring her image as an object of vast media scrutiny." 

I’ve been trying to formulate why exactly this image and comment are so problematic and I want to be able to communicate this from my standpoint as a disabled woman.

The problem is the choice to use a wheelchair as a prop to highlight Kylie’s supposed vulnerability because of media scrutiny fetishizes societal views of the “powerlessness” of the disabled. The “media scrutiny” has been incredibly profitable for her and is being falsely correlated to the experience of the disabled here. This is essentially disability tourism, trying to inhabit a marginalized position without the physical or cultural realities the disabled experience, such as navigating a world that is not designed for us. The editorial staff can delude themselves that they are making a political statement or high art. But we have to call it what it is: distasteful and offensive.

Disability, like other facets of identity, is a label externally and legally defined by society and not one that is chosen.  It is a label that can come with a certain level of marginalization, and like many externally-defined labels, stereotyping. The stereotype of the “restriction” and “powerlessness” of disability is fetishized and even parodied in this image. This parody silences the truth that a wheelchair is a tool for the disabled that enables freedom, access, and independence.

The ADA just celebrated its 25^th anniversary and the disabled are a protected class of citizens, but this was not always the case. It’s important to remember this. Yet, the disabled continue to face hurdles with full employment and participation in society. I mentioned in another post the limitations of the ADA and that the disabled continue to deal with limited accessibility in public and private spaces. These are some of the material realities that are invisible in this image.

The disabled are often treated as invisible in society. If you look at media, you will see very limited representations of the disabled and often you will see disability given a negative connotation—it’s treated as some sort of obstacle to “overcome,” a physical vulnerability, or a reason for pity or empathy. Disability is also often defined rigidly as a physical manifestation that is visible to the able-bodied, as if every disability could be “read” at a glance. Disability is not defined by using a wheelchair. Disability comes in a variety of forms and most of them are invisible. 

It’s not the fetishization that makes this image so disturbing for me. It’s the perpetuation of the invisibility and silence of the disabled community. I look at this image and see myself and others represented by that wheelchair and I am represented as a prop. A costume choice. A fashion statement. My experience is not just objectified; it is rendered silent. 

Ironically, though the intention was to make Kylie the subject of this image, the wheelchair has become the subject.

Kylie has never experienced being disabled or dealt with painful scrutiny or pressure to conform to societal expectations about what disability “looks like.” I have lived as able-bodied and disabled now so I have experienced both worlds. We need more voices from the disabled to challenge rigid definitions of disability, to express the experience of being disabled and the struggles and triumphs that come with that label, and more importantly, to show that the disabled are three-dimensional human beings. 

Often injustice comes in the form of a thousand cuts, a thousand slights that slice deeper and deeper into our sense of worth, leaving unseen scars that are continually re-opened. I have experienced derision because of my illness and disability and in the health communities I’m in people share the derision they experience daily. Since becoming ill and disabled, I am witness to injustice every day in some form beyond my own personal experience. Starting this blog is a way for me to give voice to the experiences I’ve seen discussed every day.

I’ve been asked “do you really need to use that cane?” I’ve had medical professionals ask in an accusatory tone “why are you in a wheelchair?” I’ve heard comments about being “too young” to rely on mobility aids. But worst of all, when I’m in my wheelchair and I’m with my husband, I often unwillingly become invisible. People often look through me and speak only to him.

I guess in some ways I’m “lucky” I never had a note left on my car when I have used disabled parking spots because I had to start using a mobility aid right after I got my disabled pass. My disability is “visible” to those who feel they are entitled to “proof” I suppose. I see people post pictures of the notes left on their cars often. I see comments constantly about people putting off getting a disabled placard even though they need one. I did as well.

I resisted using mobility aids because it forced me to “come out” with my illness. I desperately wanted to “pass” and I was able to for some time. If you can “pass,” you can be free of this derision, or the prying questions, or the constant staring. I put myself in constant precarious situations when I was trying to pass and forced myself to do things I physically could not do, ultimately making myself worse in the end.

It wasn’t worth it.

I’ve only recently began to get comfortable with the label of being “disabled” and what comes with that label. I didn’t choose this label. It chose me. My self-image has been radically transformed and how others view me and treat me in the world has also changed. It’s been a tremendous hurdle adjusting to this, but I’m getting there.

I put using off a wheelchair for a long time, even after my doctor gave me a prescription for one and my husband insisted that I needed to finally accept that I needed one. Once I finally started using a wheelchair, I realized I had so much freedom. I could go somewhere without having to immediately find a chair. I could navigate stores again. I could leave the house with more success. I didn’t have to count the steps from my car to a door to try to figure out if I could make it. This sense of freedom negated the comments and the staring. They just don’t really get under my skin anymore. I don’t have to “prove” anything to anyone. I’m just living my life and doing what I have to do to live it the best I can. All that time I put off using a wheelchair was wasted time.

My wheelchair gives me power. This is something that the editorial staff at Interview Magazine or people who question my need for mobility aids don’t understand. Fetishizing societal views of the “powerlessness” of the disabled perpetuates a one-dimensional stereotype of the disabled. The gilded wheelchair used as a prop is a perfect metaphor for the vacuity of the stereotype they are peddling in the image.

The voices of the disabled responding to this image or any issue related to disability should be privileged and heard to challenge the silence perpetuated in this image. This image represents one of the thousand tiny cuts of injustice and though it may be a minor cut, it deserves analysis to avoid more cuts in the future.

You can read more articles commenting on the disabled view of this image here, here, and here 

Month of Gratitude, Week Four: Resilience

I don’t have much to say this week. I hope that all of you reading this had a good holiday if you celebrated Thanksgiving, and if you didn’t, I hope you had a good week in general.

I've been physically in pretty bad shape still, but I got to enjoy the holiday. I anticipated it being more difficult since this was the first holiday without my mother. It was definitely difficult but my family and I managed to still celebrate and enjoy our time together. It definitely won’t ever be the same. My mom was my ally in the family; she was the only one as weird as me. We had the same humor. She was the person who loved me the most in this world. She was my best friend. 

Now it feels like a piece of my soul is irrevocably gone. 

But it’s ok. 

The thing with surviving something traumatic and devastating is you think you can’t survive it. And then somehow you do. You put one foot in front of the other and just keep going.

I can survive it. I can keep going. I’ve built up a pretty strong reserve of resilience the last few years.

That’s what I’m thankful for this week: resilience. Before I got ill, I was a survivor but I don’t think I was very resilient. It’s taken years and quite a bit of training to learn resilience. You have to with illness or you’d never be able to get out of bed every day.

Resilience means hope

It means acceptance

It means survival

It means renewal

And renewal is a promise for a better day 

I’m not consciously feeling resilient right now but I know it’s there. I know it’s my life support that is keeping me going. It’s giving me strength unconsciously.

I’m grateful for that strength to enjoy every bit of life right now: spending energy on creativity, seeing my friends, watching their children get older, spending time with my family, eating pumpkin pie, watching Star Trek with husband, going outside, relishing that first note when I play a song, breathing in chilly autumn days, drinking a good, strong cup of tea.

Every bit of it.

I hope you had moments to savor this week too, and whatever battle you are fighting, that your resilience is sailing you to the other side as well. 

Outside to walk a few feet with my trekking poles. Who could ask for more?

Month of Gratitude, Week 3: Little Things

I’ve been trying to come up with a focal point for this week’s post about gratitude, but the only I can really think of is being thankful for being alive and appreciating the little things right now.

My heart is very heavy after the attacks in Paris, my body is exhausted from a string of appointments, and I’m still in throes of grief. One of my best friends just lost her mother this week as well, and I’ve known her family for 20 years. I’m just trying to take a step back and feel some gratitude that despite the physical and emotional wounds we have all acquired, we survived them, and in that survival there is solidarity—a collective spirit that life must press on.

I was so weepy this week that I’ve reached new levels of absurdity. I was watching that video of Fred Astaire and Ginger Rogers dancing to “Uptown Funk” that’s been circulating everywhere and I started crying a few seconds in. I dare anyone to watch it and find a reason to cry. I at least had a good laugh about the absurdity of it. 

Even though my body wasn’t able to exercise much this week, I still went for my daily walk almost every day. It’s been a bit warm this week but I’m loving the hazy autumn days. I'm always grateful each day when I am able to get outside just for a few minutes. On bedridden days, I dream of taking my short walk.

One of the trees next to my house has gone full autumn

It’s supposed to get colder next week and dip under freezing temperatures. That doesn’t happen much in these parts because we live in varying stages of living at the center of the sun most of the time, so I’m very much looking forward to that cold. I love the cold. I prefer the cold.

Thanksgiving is next week and it’s going to be a really rough one. I’d say Thanksgiving and Halloween are my favorite holidays and my mom and I always watched the Thanksgiving Day Parade and the dog show that follows together. I’m not sure I’ll watch it this year, but if I do the sight of the inflatable Snoopy or Minions floating down the parade route will leave me in tears. I'll be laughing at the same time.

The rest of the year is going to be packed with gatherings, including my husband’s birthday. He is having a birthday party for the first time in years and I’m very much looking forward to it. His birthday is at the beginning of December and when I was teaching or in grad school that was always the busiest time of year for me so his birthday celebrations have been unfortunately minimal in the past. I hope we can make up for it this year. Our four year old nephew’s birthday is the day before my husband’s so I kept telling him he should have a dinosaur –themed co-birthday party. Maybe next year.

Then we’ll have our annual NYE gathering at my parent’s house and since my step-father is moving out of state, this will be the last one there. I’m terribly sad about all of it but I’m trying to remind myself to enjoy these moments since everything has changed and will continue to change.

That’s the strange thing about life. You think that everything will just somehow continue as it has been. That the march of time will somehow leave the details of life, the simple things we take for granted, untouched. But that’s not how it works.

I’ve been re-learning Christmas music to play at the assisted care facility where my mom was, and it’s been probably a decade since I’ve learned more than just a few songs this time of year. It’s given me a reason to practice with purpose and I’ve been playing every day.  I’m very much looking forward to playing music for them and sharing some joy. They are a great audience and deserve some joy.

I even sang an entire verse of a song this week, which is an improvement over what I have been able to do. I hope that’s a sign I can someday make it through an entire song.

This is what I save my spoons for

I hope you also had some little things that made you feel gratitude this week. We could all use some joy in whatever form we can find. 

Month of Gratitude, Week Two: That One Thing

Man this is going to be an emotional post.

Like I mentioned last week, I am writing one post a week this month about gratitude, specifically how illness has taught me to feel more gratitude.

As illness peels away layers of identity and you’re left with just the essential, you are able to see the very center of your happiness and what feeds it. I hope you have one thing, more than anything else in your life, that illness or pain has not taken from you and brings you the most joy in life.

My one thing is music. Aside from rap and modern country, I like most music genres (even those two I listen to occasionally). Jazz is my home but I also love classic rock, world music, alternative, blues. I have probably mentioned before that I’m a musician/songwriter and have been for a good portion of my life. If I could choose just one profession in life, I’d be a performing songwriter. Although I was rarely paid for it, I did get to live that dream. I haven’t talked about music much because it’s one of the most painful aspects of illness for me. I haven’t been able to perform in about a year and a half, and because of my breathing problems, I had to stop singing a year ago. It feels like I have literally lost my voice.

But this wasn’t always the case. 

My whole life I begged my mother to let me take piano lessons. Most kids are forced to take them, but I wanted them desperately. She couldn’t afford to pay for lessons, so my first year in college I made enough at my job to pay for lessons myself. I took lessons for about two years. My piano teacher would often put classical music in front of me but she humored my love of jazz and my need to improvise. Although I didn’t take lessons for long, she taught me how to create arrangements and improvise. She used to tell me, as I was playing something from a piano book or something classical, “you don’t have to swing everything.” The rhythm of my heart is jazz swing. Even now when I find myself trying to swing some music that doesn't need it, I think of her teasing me and I laugh. 

When I was a teenager, my best friend used to live out in the country and I would use the time I spent picking her up to sing in my car. When one of my acquaintances during that first year in college started a band, I went out on a limb and asked if I they needed a vocalist. I had not really ever sang in front of anyone before, but I wanted to be musician, even if I had to pretend. I was in a band for about a year, and it was fun learning how to build a song with a group of people, but my bandmates had no desire to perform. We had different goals. The band disbanded and my friend and I started a duo together. We wrote a bunch of songs and would perform in coffee shops. We’d throw in a few Nirvana and Tori Amos covers since we were children of the 90s. We only performed a few times so I decided to take my nascent piano skills and start performing solo. Those first few shows must have been painful to watch. If I heard a recording of them now I would cringe. But I was determined.

A year or so after I started going solo, another acquaintance organized a show at a local renovated old theater. He made me the headliner. That was the first time I ever played for a live audience. I was only the half the musician then that I am now, but it is still one of my favorite memories. There’s nothing quite like sharing your passion with others and getting an instant response. I got great feedback and I pressed on with my dream.

I played in coffee shops, bars, restaurants, weddings, and even a flower shop that had a piano. I got to play for live audiences again when I did musical interludes for my college’s performance of The Vagina Monologues. One of my best friends is an obscenely talented keyboardist and we decided to join forces a few years ago. We started doing a lot of shows and it became a reason for all of our friends and family to gather. Those are still some of my favorite memories. Our last show was July 2014.

One of my favorite memories is when years ago I contacted one of my favorite artists Janis Ian, the consummate singer-songwriter. We corresponded through email a few times, and I asked her for any pointers she had to share. She told me that in her 60s she felt that she was just finally getting her stride with performing. I was planning on recording one of her songs and had hoped to include it on a cd I wanted to sell so I asked her about royalties. She responded that she didn’t own the song but wished me the best of luck and asked if I’d send it to her. I did record it but never sent it to her. That was almost 10 years ago. I suppose I should send it to her someday. (You can find the song, “The Come On,” on my soundcloud page). I don’t have those emails anymore but I wish I had saved them, if only to convince myself it wasn’t just a dream.

I didn’t play much while I was an academic and when I was teaching. I wish I had set aside more energy for it. I assumed, as so many of us do, that nothing would change. That I would be able to play music in the same way for the rest of my life. I was wrong.

When I got ill in 2011 and had to leave my PhD program, music was my solace. I wrote a few songs during that time that I’ve never performed or recorded, but hopefully will someday. I played a private gig for about 10 of my good friends in the program before I left as a goodbye gift. I had lost about 20 lbs and was very ill, but I powered through for them and I think they appreciated it.

After we moved back, my friend and I did a few shows together, but every single one I had pushed myself too hard to practice and I was in very bad shape on the day we played. That last show we did, I should've spent the day in bed but I'm glad I pushed myself to do it. I left each one feeling tremendously disappointed I couldn’t be the performer I used to be. Yet, I look back now and feel thankful for those shows. My mom was at most of them. Every time we played, I always tried to throw in a song just for her. I played Fleetwood Mac’s “Crystal,” one of her favorite songs she introduced to me, at one of our last shows in 2014. She was not well but I watched her sing along with me as I played it.

Now that so many things have been stripped away from my life, I can see clearly what I valued the most, what is integral to my identity. That is music and performing. I could accept never teaching again or having to use a wheelchair for the rest of my life, but playing music is non-negotiable. That will not be taken from me. That is the one thing that is mine still that gives me the most joy.

I still play my keyboard most days and still try to sing. I can get through about half a song before the respiratory weakness kicks in.  I don’t have the power in my voice I used to have and I don’t know if I’ll ever get it back. But that’s ok. I live on a quieter frequency now anyway.

When my mother was in the hospital and then hospice last month, I lost music briefly. Playing music and listening to any of my favorite artists/bands brought me no joy. But in the last few weeks, I’ve been listening to the playlist I made for her and playing my keyboard again and it is once again a source of solace. I played the piano at the assisted care facility where my mother was while she was in hospice. On that last day when we were all there to say goodbye, I played for about a half an hour and many of the residents gathered around the piano. One man who was in a wheelchair would clap along to every song. Although he was hunched over and had difficulty talking, he had an impeccable sense of time. I adjusted the time signature for each song to match his clapping. Right now, I'm trying to re-learn some Christmas music to play for them next month. I’m hoping to go back there soon.

I am going to get back to singing and I am going to perform again. Whatever that looks like, it will happen. I have a collection of songs that I’m ready to record and turn into an album, and that will happen. Illness has been a gift in that it has shown me that music was ultimately my greatest passion in life and it’s also inspired many songs I've written. I was able to record one last year, “Upright,” which you can also find on my soundcloud page and on the bottom of this post. Illness has given me a new sense of purpose and drive to play music as often as possible.

I didn’t mean to divulge so much and miss the point here. I guess I needed to look back and celebrate these memories I still have. The point is I hope that you also have one passion or joy that brings you the most pleasure and no matter what setbacks you’ve experienced that you are able to return to it again and again. That it is never taken from you. That it is your greatest solace.

I would’ve continued to take this passion for granted if illness hadn’t let me see it for what it was. 

No matter what, I still have all of those memories. As I talked in my last post about learning how to feel satisfied, I feel satisfied that I can still play, even if it’s not the way I ultimately want to. I still have it. It’s still there for me, and nothing can wash away what music has given me.

My wish for you is that whatever your greatest passion is, whatever that one thing is, that you can hold fast to it and enjoy it for as long as you can. Never surrender it. Make time for it. Celebrate its role in your life and your identity.

And then, more than anything, share that one thing with others. 

*Special thanks to Carrie Anne for all the great pictures over the years

Month of Gratitude, Week One: Satisfaction

As it is the month for gratitude, I am going to write at least one post a week this month discussing illness and gratitude. Although illness has taken many important things from me, there are many gifts it has given in return. One of the most important lessons illness has given me is to learn how to be satisfied and gracious in that satisfaction.

Dissatisfaction is a state of being for many of us, and it can be a valuable tool to help us achieve goals. I lived most of my life always thinking, literally, “what’s next?” I wouldn’t have been able to go to grad school twice, achieve my goal of getting a tenure-track professor position, climb mountains, or power through illness like a warrior the last few years if I didn’t know how to channel “what’s next?” into achieving goals.

Yet, this “what’s next?” also pushed me to make choices that weren’t good for my health and, more importantly, it blinded me to the immeasurable gifts I already had in my life. If I have one regret since getting ill it is that I took too much for granted and didn’t appreciate what I once had that is now gone. “What’s next” was a distraction from being mindfully present and allowing myself to surrender to satisfaction, to look around me and feel grateful for my life.

We are trained from a very young age to never be satisfied. We are conditioned to become consumers from the moment we are born and to look for “bigger and better.” Satisfaction, in American culture especially, is a truly radical idea. Everywhere we turn, we are constantly persuaded to want more and to be more. “Bigger and better” and “what’s next” are illusions; they create desires that can never be quenched.

Yet, as the speed in which my world spins has slackened, as the alacrity of my own body has dampened and my legs—once athletic and invincible—stumble along at a glacial pace now, I am now still much of the time. It has helped my mind be still as well. In moments that are thick with suffering when I’m lying in bed and surviving moment to moment, I am forced to live in the present. The pace of my world has significantly decelerated, but the images of life are no longer blurred in speed. They have color, texture, definition.

It seems ironic that illness would give me this lesson. If we are often told “your health is the most important aspect of life,” then you would think living with a life-limiting illness would be the most unsatisfactory state of being. Yet, “your health is the most important thing” is a platitude; it assumes that those of us who live with chronic illness have nothing because we don’t have “our health.” This is fundamentally false. The loss of my health and my independence has taught me to value what I still have and despite being ill I can still enjoy what I still have.

It has taught me that there are moments to savor in life. There are moments when all of the ingredients of life—the people in our lives, the words we say to each other, our perceptions of the world, our self-image—meld into something truly delectable. These are the moments when we can feel truly alive, feel the electricity of being human. These moments were not on my radar before illness—before I was forced to be still and live in the present. When you live under the spell of “what’s next,” it’s easy for these moments to pass by.

I try to find moments throughout the day to just breathe in satisfaction and feel it completely. 

Feel...

Satisfied with the limitations I have now and what I can still do

Satisfied with my appearance

Satisfied with spending most of my time at home

Satisfied with each moment I get to be outside and be part of the world

Satisfied with my relationships

Satisfied with my material possessions

Satisfied with how I physically feel in this moment right now

Satisfied with my talents and abilities

Satisfied that the present is here but the future is a mirage

Satisfied with the treatment I have right now

Satisfied with the time I had with my mother

Satisfied with the change I am able to enact in the world

Satisfied with the energy I can give to others

Satisfied that my condition may get worse or get better

Satisfied that I may work again or I may not

Satisfied that my place in the world is just as it should be right now

Feeling satisfied at times doesn't have to stop us from setting goals and seeking improvement in our lives and in the world around us, but it's ok every once in awhile to appreciate and value that what we have is enough. Satisfaction also doesn’t have to be a constant current and it is by no means a constant sensation for me, but illness has forced me to look around at the world and appreciate the gift of life. It is an integral part of living with acceptance. In those delectable moments I can say thank you for the giftedness of life, even if it’s just for a breath—but I’ll make it a long breath and try to feel an entire lifetime of satisfaction in that moment.

I hope that you also have moments of pure satisfaction, moments where you can just stop and say "thank you."

How has illness or any other setback in life helped you feel gratitude? 



Here's a great TED Talk about gratitude: "It is not happiness that makes us grateful. It's gratefulness that makes us happy"