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Meet Rae McAlister

Today we’d like to introduce you to Rae McAlister.

Rae, before we jump into specific questions about your work, why don’t you give us some details about you and your story.
I was immersed in music since birth with a music professor for a grandfather, both parents larks, father a brilliant guitarist, and mother adept at any symphony instrument you lay before her, and two sisters who sang like angels. We all sang in church choirs, except my mom. My mother who was a quiet soft beauty and sunshine and flowers, fell deathly ill and was mostly confined to home and sometimes bed, not really knowing what was wrong. Some days seeming almost fine and therefore drawing all sorts of stigmas and attacks of faking it or wanting attention. Doctors could find no immediate answer and would deem her a hypochondriac or melancholy and send her on her way. Not much has changed. My father was gone before we woke and home after we would sleep at times, working so hard. When he did get away he would take us out to the wilderness to decompress surrounded with water and camping. So he ingrained in me the stepping away and reconnecting with nature.

I spent many of my days traipsing through our own wild woods just singing.

That’s how I came across my composition style. I can do it without woods of course, but I much prefer them. I began writing decent poetry in 3rd and 4th grade, winning writing competitions. My first real song accompanied by piano was in 6th grade and it had a 50’s feel that I still remember how to play!

At that time, I was being classically trained and our range of music had mostly been gospel and classical. When I was just a tot I’d found an AM radio and became obsessed with big band radio, and when my mother fell ill and I took over most of the responsibilities of the milk farm, I fell in love with the 50’s and 60’s radio while I worked.

My father was a jeweler who made incredible art pieces with his Midas hands and was restrained to mostly doing repair work in a corporate shop in a mall at the time. Some days I’d ride with him to work and I’d hear the pop music playing there as I wondered about the stores, or during the good old skate parties with school, but for the most part, the top hits just weren’t something I heard.

A girl moved next door that mixed the pot a little. Her family had an incredible record collection, one of which was The Best of Simon and Garfunkle, whom I already loved, but it gave me so much more. I still have the tape my dad made from that, warped from use. Then my parents introduced me to Don McClean, The Carpenters, Judy Collins, James Taylor. The harmonies and lyricism, syncopation, and beauty still sit so timelessly in my heart. This was definitely one of the most impactful to my writing styles. I remember hearing my dad listening to some jazz and coming across the Unforgettable album, getting weak in the knees. But when I got my hands on fake books and learned all the Gershwin and Porter, I began watching all the old movies, and I was such a goner. My grandfather made us a collection of videos of all the great musicals. My sisters and I would watch those over and over again. So I got a healthy dose of Broadway as well.

Things reached a fever pitch when my mother reached only 65 pounds at 5’8. Doctors were doing nothing for her but attacking her for her own illness and the hospitals made her more sick as she seemed to react more to the surroundings and treatments being in such a vulnerable state. I watched her pouring over thick medical books through slightly open doors all hours of the day, trying to find answers herself. The sweet soft woman she was gave way to a warrior, never giving up as she’d seen the signs in us, her daughters, and didn’t want this fate for us. Winters were especially hard on her, and she softly told me one day driving she didn’t think she’d make it through another one here in the Midwest. She remembered doing well in the mountains and was going to make a go of it. I told her I’d come to take care of her, as I knew my father couldn’t leave his business and the involved lives my sisters had here…she knew I always had itchy bones to travel. So away we went to Estes Park.

Her health did greatly improve, almost immediately. Later we found due to in part to extreme hypo-tension she was dealing with and the help of the blood pressure rise from the elevation. My symptoms were actually worsening with age and my mom brought me to doctors in Denver to get an EKG done as my muscles were clenching intensely, intermittently. The metal inserted into the muscles in my hands they, wheeled a machine in and turned it on to measure the level of electricity flowing through my muscles to try to trace the seizing. The machine fizzed with static and went blank. They apologized for the inconvenience and fidgeted for a moment with another. They reattached different electrodes on the opposite side and repeated the test.

As soon as the second machine began the same behavior they unplugged it to save it. With the few results that they retained they told me the level at which my body was producing electricity I shouldn’t be able to move or walk, I told them I worked very hard at it and that it was a balancing act of knowing when to stop and go to accommodate its ebb and flows. We did notice that any adrenaline rush made it far worse. Hitting a home run, I couldn’t let go of the bat, everything would clench and I couldn’t move. The gunshot on a starting block, it would keep me from launching. Cues to go on stage acting. My turn to enter the catwalk modeling. Later in life, in the middle of playing a concert, mid-strum on guitar or arpeggio on piano. The most inconvenient times. At the time they just told us I had a neurological disorder and didn’t know what. I can’t recall when my mother started making all the connections and finally discovering what it was, but she found the genetic mutation and its name. She became very involved with helping multiple people who couldn’t find treatment or diagnosis instead of focusing only in her own misfortune and fight.

I continued on as if nothing was wrong. A healthy dose of denial and not wanting it to become my identity it admit I too may end up tired to a bed. I led a free life of travel and reckless spontaneous adventure while young, I found myself here in Fort Collins, playing my guitar in the square among a movement of wild youth that had populated the downtown. A little coffeehouse named Paris had become a home for so many of us. Most of us having terrible crashes with the constructs of society and unaware we could fight for our own world, we found a place we felt we belonged for a moment. That’s where I met my husband one balmy night in June, busking and playing music on the stone steps that used to be in the heart of the square.

Two children and many stories later, long after Mom had been officially diagnosed, my symptoms had become nearly unbearable. I’d ignored pain and disjointedness for so long it was just a hidden truth behind a smile. There were many times my body has just given out, like being a CNA and trying to transfer patients. Mom found a neurologist nearby Coeur d’Alene, ID where we were living, in Spokane Washington. She had them do the blood draw and sent it to a geneticist she’d worked with from all of her work helping others get diagnosed. So my daughter and I were officially diagnosed with Thomsens Disease, or Myotonia Congenita, and Ehlers Danlos in about 2011, and my other daughter with Ehlers Danlos. I began getting terrible tremors and had an immense amount of electricity run through my entire body to blow open my receptors and it made my pain levels skyrocket. I was told there was pretty much not treatment for anything I had and that neither of them should cause pain which made no sense what so ever.

The hyper-mobility, Ehlers Danlos. A collagen deficiency that makes all soft tissues to damage easily, and heal slowly, become looser and looser so that ligaments become more likely to disjoint and dislocate and even soft organs like the liver have difficulty holding themselves together. Between the tensing muscles and loose joints, the pulling out of anything from a shoulder to a kneecap can happen at any time and it can relocate immediately or take weeks if it swells and becomes difficult to reseat. It can hurt like childbirth one second and feel fine the next. Once a major injury occurs, whiplash or shoulder cuff tear causing shoulder dislocation, it’s likely to cause frequent injury with very little cause. Turning the head too fast, putting on too tight a shirt, playing the guitar too hard or too long, caring an amp, or turning the wrong way.

My worse one is if I take a step the wrong way my knee cap actually goes off my leg to the right. My brain has a stroke of sorts to shut off the connection to the knee to keep it from further injury. It tears the meniscus, the connecting tendons and as a result, the nerves all the way up my spine and down to my ankles get confusion and until repaired sometimes for a year cause boiling and freezing sensations. I have to rebuild the brain connection to the leg on top of the slow repair of the leg since the soft tissues take almost twice as long to repair. This is what put me in the wheelchair for years and what weakened it was a job as a sales trainer in a telecommunications network that had me running miles a day and 60 hours a week.

While I was on the phones it made me lose my singing voice for two years. I started with a brace and crutches until my shoulder began to dislocate when I would get stiff and it would launch me off of my crutches. Angry birds were popular at the time and it earned me the name Rovio, the creators of the game. Then my shoulder began to dislocate, and elbows from the weight and constant motion of the crutches. I had to start taking time off of work. I once taught a class with a dislocated shoulder for a week, there’s really nothing to do but wait for the swelling to go down after it’s happened so many times as the forced relocating causes so much tearing the recovery is excruciating. I had an army medic in that class that didn’t believe me until he examined it and sat down in silence. When it relocated in the middle of class with a thunderclap he almost threw up. I just stood up and started writing with it…it’s just a norm and a level of pain one learns to live with and a massive pumping of adrenaline constantly produced to maintain the stability of Ehler’s joints.

After missing my max amount of work I began getting calls from HR telling me my job was in jeopardy. The Salvation Army I was volunteering at started asking me where I was and they needed me. When I told them I couldn’t even stand or use crutches they brought me a wheelchair and I was ecstatic. I returned to work and volunteering but they actually began chastising me for not keeping up. Thomsens also can affect the mind when under heavy stress. It is, after all, electricity at high levels, and it can feel like electric shock therapy, wiping the brain at times for me. I became absent-minded between the pain and what felt like mini-strokes.

With my shoulders, fingers, and wrists hyperextending I couldn’t always make it back and forth in time from bathroom breaks and printing material. My tailbone was disjointing from sitting in the wheelchair, my lower spine curving, things I can’t even speak of. HR began intimidating me and I told them I was willing to take demotions to help the company, but even going back to the phones my fingers were dislocating while typing. One day I just broke down crying and the lady next to me asked why I was putting myself through this. I was making a 5th of the pay, after working so hard to climb through the company years working for them and slowly deteriorating, they’d shown me no compassion and dropped me to the lowest position a month after naming me employee of the month. After exploding at her, I apologized and told her she was right, realized it was nothing but my pride, logged out, dropped my headset, and rolled right out of the doors.

We were T-Boned by someone cruising through a stop sign as I started to make some progress on my own and had immense setbacks. Things progressed and got much worse. Everything kept tightening up and I pretty much got dead in the water. There were days I couldn’t dress myself, needed help to even make it to the bathroom, help showering, in and out of vehicles. I also developed some pretty heavy anxiety issues, feelings of complete uselessness, hours of staring at cracks in the ceiling and not even able to make my own food, waiting for children and my husband to come home before I could do anything. I would compose. I would lay on my back and sing. I got music back and was able to watch my children grow. Working all those hours I was missing it.

After a couple of years of this, I was able to get on disability, after working since 15, it was very little due to the demotions as was the long term disability to fill in because of the same. My husband’s job moved us back to Colorado where I was able to find a good doctor and decent medicine, I started creating my own kind of stabilizing muscle building technique and moved up to a cane and eventually intermittent walking which is now the majority of the time. I never know when a flare-up is going to hit. I’m highly affected by the cold, allergies, inflammatory foods, stress, a new one is anything that may activate seizures. Sometimes it shows up from absolutely nothing at all! I have to highly regulate how many performances I have, and planning them far in advance frightens me as I have no idea what shape I’ll be in then. At times I think I should find a way to only do online performance art, but I’m worlds away from grasping that or building that presence. I’m hoping I can, as it feels it may be my only realistic option after the affects of trying to keep up with just a few gigs a month. Carrying equipment and set up can leave me in so much pain that performance seems impossible, but I bully through. Ukulele has made this so much more realistic but it really corners my sound and doesn’t show my scope at all.

I was fairly recently diagnosed with autism which explains so much of my difficulty understanding complex situations, such as people not saying what they mean or veiling their emotions, and facial recognition which is a terrible hitch in this job. I imagine it’s just another side effect of the mass amounts of electricity, but it probably also accounts for so much of the visual acuity that accompanies every word of my music and being able to break out of the confines of the average chord progressions and genre types at times. It makes me quirky, difficult at times, confusing, and cyclical. It’s something else that’s hard for me to share, but I’m hoping in some way, shape, or form it helps someone relate or gives them that feeling that they aren’t alone.

I decided that I may only have a short time, there was no telling how hard this monster may revisit, and I wanted to somehow begin cataloging the many, many songs I’d written. I got into a studio and began making an album with an incredibly talented and wonderful to work with engineer. He was offered a position in Tennessee and we never got the chance to finish the project. I find myself constantly writing and moving in different directions, and studio work has always ended the same for me. I have found so much joy playing with other musicians that this year has been the dream come true for me. Opening twice for my favorite band, The Widows Bane, and taking in every show I can of my other Favorite Band with some of the same players, Gasoline Lollipops made it feel like a never ending adventure.

I heard The Widow’s Bane last Halloween for the first time and their creative performance grabbed my husband and I hook line, and sinker. (No pun intended, undead pirates and all) When we found they only performed a few times a year we dug deeper to find all of the musicians performed in other capacities. We went to see Gasoline Lollipops, which had many of the same players featured, at their next show which happened to be all the way in Taos, NM. After steeping ourselves in their music, we made the beautiful drive and had a wonderful experience where we actually were able to meet the band. When we saw them again at a Magnolia Sessions at The Artery we were blown away that they remembered our names. We found this kind of personal connection with their fans, who then become close to each other and part of the Gas Pop family, is such a beautiful, genuine phenomenon and so rare. I attended the annual Upstream Mountain Songwriting Retreat in Estes Park put on by Upstream Concerts that Clay Rose, the lead singer, was a teaching at. I learned so much about composition and performance.

One night I was playing my ukulele for a couple of students to get their opinion as I was just learning, when Clay came into the room. I happened to be playing a song I wrote about our trip to Taos when we went to see his concert, a song called Why Won’t You Dance With Me. He asked me to open for The Widow’s Bane at The Bluebird! I think I nodded and tried to be cool and didn’t even say goodnight to my friends and just tried to not get stiff or fall down as I made it back to my room to scream and scare my husband. Ha. It’s been such a dream to know and perform with Clay, to meet his brilliant family, including mother Donna Farar, who is also a stellar songwriter, and to see how he just brings everyone around him to an elevated level effortlessly. Gasoline Lollipops’ amazing shows, as they have such creative venues and events and they are one of the first bands we both love, constantly have us going out when we would be hiding at home.

I also have become close friends with a dear musician named Brian David Collins. He writes inspiring music with lovely lyrics with a Billy Joel flair. He can sing any cover with his own twist even if he’s only heard it once, or compose an intricate piece to a song I have sung for him one time. The most shocking to me is he will play a long beautiful song and one of his sets and I will ask him when he wrote it because I hadn’t heard it yet, and he will say he just came up with it then. Despite the challenge of being sight-impaired he swims 50 laps daily and is kind to everyone he meets. He never forgets a voice and treats everyone like an old friend. I’d heard him at Avograss and approached him at the pools to say hello when I was doing my Bars dance routines I’d created in the water to regain my ability to walk. We did an open mic together and he later contacted me to do harmonies on his album. We became good friends, his family warm and accepting, teaching me so much about grace, performing through imperfection, accepting myself, and how to be a successful artist. They give me such personal support and advice. And when things get really physically, emotionally, or mentally tough they are always there to pull me through.

Sometimes out of inconvenience I’ve pushed through the freeze and feel the tearing muscles and tendons and I have forever lasting damage, I still do things like that for gigs and events, it’s worth it sometimes for the memory or the moment. I’ll wait up until the time tries to calm the nerves and the muscles and give it all I’ve got with that pump of adrenaline and suffer it later. It just can’t be comprehended by those around you. We’ve been taught in society you’re sick or you’re not. You’re wounded and get better or you have a disease and get worse or die. There are thousands of invisible diseases where people have to count their steps in a day and the energy they use to go to a store may mean making dinner or not. Yet they park in a handicap space to preserve just a little extra effort and someone follows after them yelling,” I don’t see your wheelchair!” or maybe one day you do have to use a wheelchair and the next day you don’t and are treated as a pretender.

It’s so strange what it does to the human psyche and I know people can’t be blamed as it’s a very odd subconscious misunderstanding but it takes a silent toll and slowly instills guilt and shame. Even very close friends, colleagues, family that you trust wholeheartedly begin to cast shade, act like you’re avoiding them when you need downtime, using it as an excuse, think you’re a hypochondriac. It can take a giant toll and I began hiding it to keep people from thinking differently of me. I can even withdraw entirely from society at times and leave friendships behind if it gets bad enough. Often I allow some to sort of know about it, but I really just hide on my down days so they just don’t see me in my vulnerable states. I cancel on things but don’t really give reasons so it doesn’t become awkward. It’s fully acceptable for someone to be nursing a cold but not to have tangled nerves pulling at your spine.

On top of everything else I now have developed Osteoporosis and Arthritis although I’ve lived mostly on a veggie protein diet all my life. I allow myself more now as all my restricted living still left me in this state. I want to live a little now and again. Ha. Recently because of some more pronounced difficulties with neurological brain issues surfacing I also had an MRI due to neurological issues surfacing even more pronounced. Time inconsistencies, repeating choruses. Sometimes I get the feeling I’m very large in a room, or something is so far away. It revealed a white matter brain lesion usually only found in geriatric patients with dementia and often results in MS. They are common in my family as is dementia so it’s even more of an incentive to get this music out and not to waste a second of my time. I’ve always let the stigma of making it perfect before sharing stand in my way, and it’s never perfect. I’m finally just getting it out and hoping people enjoy it.

My sister was also just diagnosed with ALS this last year and is going to need many alterations to her home as she is quickly losing mobility. Watching her go where I just came from and knowing she won’t be able to work her way back is unconscionable. I really want to put out a project including a song I’ve written for her to fundraise for their alterations as well. So I have quite a few driving forces beckoning me to overcome my personal setbacks and symptoms that stress and performance push over the top, in order to accomplish the seemingly impossible to me, finally putting some of my music out there. I’m going to try to apply for some grants through the Bohemian foundation and vocational rehab to help with the costs, and ask many of the incredible musicians I have met along the way to play with me on the albums.

So here I am professing all, and I plan to do so on a bit of a journey via social media, too, if I get the nerve. I’ve told a little of my story before and I’m speaking out more and more. I’m also making myself a little more vulnerable in front of my peers and it’s endlessly difficult for me as my pride is also endless. People truly do look at you differently, but there are so many out there dealing with these invisible diseases that come and go. 10% of the population deal with Ehlers Danlos alone. Doctors overlook so many of these conditions, also, and undermine their patients. For so many years they would run a basic panel on me and tell me there was nothing wrong. They revert to the common notion that I needed to take an antidepressant and maybe see a psychologist. The public view and attitude needs to change, support needs to be unconditional. Thank you so much for listening to my story.

Can you give our readers some background on your music?
I’m a singer\songwriter. I’ve been writing a very unique retro-sounding jazzy genre ukulele composition, I write everything from Baroque Pop, Folk, and Indie on the Piano and Guitar. I’m most proud of overcoming both poverty and homelessness in my youth to the mental and physical challenges currently to become a successful musician due to the incredible supportive music crowd around me. What sets me apart from others is my unique sound and style, my fun positive demeanor, and my ability to have a good time no matter where we are.

How do you think the industry will change over the next decade?
I think the music industry will always be the big fish producers making the money while enslaving the true talent, but I think the rise of social platforms is making it possible for talent to take their career into their own hands. I personally hope online concerts become more popular. It makes it more possible for people like me to set up a beautiful surrounding without relying on concert venues who make all the money and people can pay them via venmo and tipping, while also making it possible for homebound or socially impaired to be able to view and be involved with a live performance from their home. Also on some platforms that performance will then be immortalized instead of gone in an instant, and musicians will have more control over lights and sound instead of being at the mercy of a venues abilities.

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Image Credit:
Music Laughter and Love Creatives

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