A Gallic Treat?

My husband has a favourite restaurant, which is set in the beautiful hill area of Clent in the rolling green Worcestershire countryside, some ten miles from our home. The building also has some en-suite rooms, which are always in great demand. The cuisine is also excellent; the theme of the restaurant is French. All around, the intimate rooms that make up the ground floor are various interesting Gallic artefacts.

The prices are, as you would expect, a little higher than normal for the area, but it is, nevertheless, a favourite haunt of many people who come from far and near to sample its culinary delights.

I have a problem with the place. Not with the food –they’ve started marking up certain dishes as “GF” (Gluten Free) and these are remarkably tasty, my favourites are the boar sausages on a bed of mustard mash, and the venison– nor with the bar, which is cosy with an intimate atmosphere and is full of strategically placed leather armchairs and settees, which all have arms and are easy to manoeuvre oneself in and out.

No. The difficulty is with the toilets. On the ground floor is the “gents” –right by the back entrance, which is the one used most often and which is near the car park. However, the  “ladies” is on the first floor, and only accessed by means of a rather fetching curved staircase. There are some stools scattered around within the well of the stairs, all of which seem to be occupied by young men who totally ignore me as I grasp the ornate wooden bannister on one side of the steps and, grim-faced, set about climbing the north face of the Eiger. The steps, being mainly on the curve, are narrow at the point where I am f forced to climb, and I am aware that I’m one slip away from falling disaster as I inch my perilous way upwards, step by agonising step.

It’s still fresh in my memory: we were there last night to celebrate my husband’s birthday with most of the family, a merry party. At one point, as I paused to catch my breath, I heard a comforting voice behind me: “It’s ok Ruth, you’ll have a soft landing if you fall” and there, following me, was my daughter-in-law. If this were fiction, some gallant, tall, handsome blue-eyed man would immediately have sprung to my assistance –oh yes, that’s right, my gallant, tall, handsome blue-eyed husband is still in the dining room downstairs, sipping beer and exchanging jokes with his sons.

I struggle up, manage to complete my “toilette” and struggle down again. What’s French for: “Why can’t you convert the gents into a facility for the disabled and make my life easier?”

Ruth Wood is a regular contributor for SRNA blog. Based in the UK, Ruth was diagnosed with TM in 2006. She now shares her personal stories with SRNA community.

 

Time – Reflections

I’ve been giving a lot of thought recently to time – or rather, our individual concepts of the passing of time.

Before my first TM attack I had a very full working week. I was brought up in a household with both parents in full time employment and my mother, in particular, worked very long hours doing two jobs. She owned her own commercial school, which opened in the evenings and on Saturdays, and during the day she taught at a local school. Later, during the recession, when the commercial school closed and reverted back to (our) house, she began working as a full-time-college lecturer. This was the pattern to which I was accustomed, and after college, I followed it without any real conscious decision.

My days and evenings were full. I was traveling between different schools, colleges and private houses, as well as taking part in rehearsals for productions of various sorts. As a professional singer and teacher of voice, it was a rewarding though often tiring existence.

ATM – After TM – I found myself existing in what I saw as a kind of vacuum. Days, even weeks, had passed quickly in my previous existence, but suddenly there were not only days to fill, but also minutes and even – horror – seconds! They dragged by while I took whole days trying to do what I had previously not even given attention to – so-called basic actions such as brushing my teeth, combing my hair, dragging myself around the house. Even using the computer was no longer a quick task. My typing skills had disappeared with my sense of touch and I now had to literally look at the keyboard to see where the letters were.

I’m six, nearly seven, years down the TM line now, and after another four attacks have found my biggest problem is boredom. My mind is slower, due in part to the medication but also to non-stimulation. Last night I was involved in a conversation about free will with my son-in-law, and though I found it refreshingly challenging, I was exhausted afterwards.

Last week our two seven-year-old twin grandchildren were staying with us. My Grandson is very intelligent and very quick physically; it was hard to keep up with him. For his mercurial nature, a five-minute period without some challenging activity left him with a scowl and “I’m bored” ringing on his lips!

I watched him and smiled.

~ Ruth Wood is a regular contributor for SRNA blog. Based in the UK, Ruth was diagnosed with TM in 2006. She now shares her personal stories with SRNA community.

Video of MasterChef winner Christine Ha living with NMO

Christine Ha was diagnosed with NMO in 2003. As many other people suffering from rare neuroimmune disorders, she was struggling with her condition and often lost hope. However, through her passion for cooking and the help of family and friends she managed to fight for herself and her dreams. Through her perseverance, strength and positive energy she became the first blind contestant on the hit reality TV show, MasterChef.

Christine has recently teamed up with The Jubilee Project to produce a new video about Christine’s experience on MasterChef living with NMO.

Don’t forget to pass it along and advocate for all those affected by rare neuroimmune disorders!

Pacing

You would think that after nearly seven years, I would have managed to absorb the fact that I need to “pace” myself every day to make sure that my energy levels don’t get used up in one fell swoop. Somehow, though, the message doesn’t seem to have got through.

Take last week – a case in point. Sunday I had an unexpected pleasure, when my son got in touch to say he was coming to see me and take me out to lunch – it was Mothering Sunday. Sensibly (as I saw it) I phoned my apologies to my friend at church, with whom I was supposed to be singing, so I’d have a nice rest. So what did I do?

It wasn’t resting! I rushed round clearing, tidying and loading the dishwasher (not that my son would notice), then texted him to say that as I wasn’t going to church, why didn’t he come over earlier? Result – a lot longer with my son, but no rest.

Which wouldn’t have been quite so bad – but I’d already arranged to drive over 60 miles to see my parents, because it was Mothering Sunday. So I rang them – to say I would be arriving later than I’d expected, then stayed longer when I did get there, so by the time I got home I was exhausted.

So we come to last week. I’d arranged to meet my daughter at a halfway point, about 34 miles from each of us. Because I was so tired, I was running late – texted her – she was making a special trip so I ended up driving nearly 60 miles to see her. Being so near to where my son and daughter in law live, it seemed to make sense to go the rest of the way to see my grandchildren – so I didn’t start to drive home until much later than I’d intended, a journey, which was now nearer to 70 miles than the original 34.

Halfway home I started feeling really sick, which I’ve discovered means I’m getting really, really tired. I didn’t need to do any of this extra stuff, but I forgot I can’t do it anymore.

Tomorrow – well, I’ve arranged to help out at church, then I’ve got to go shopping…………………..!

~ Ruth Wood is a regular contributor for SRNA blog. Based in the UK, Ruth was diagnosed with TM in 2006. She now shares her personal stories with SRNA community.

Photo Credit: Roberta Pesce

The power of advocacy

My life with TM started one day in October 1989, when my dad had to take my brother and I to go pick up our mother at the mechanic shop. Her car had broken down so the day was already not going well. When I got out of Dad’s truck I fell to the ground. My parents thought nothing of it and instructed me to get up, which I did. Over the next couple of days I was falling a lot and crawling around the house. My parents took me to a couple of different doctors since I was complaining of pain in my legs. It was believed I was simply regressing as a psychological reaction to entering kindergarten. The following day when I couldn’t get out of bed my dad called a nurse hotline and informed them what was going on. An ambulance was sent to the house and I was taken to the hospital. This time someone thought to X-ray my back. There it was – a lesion on my spine. I was admitted to the hospital that day.

At the time my parents were told that I was never going to walk again and that they needed to prepare themselves to have a paraplegic child. My mother, a nurse, asked a simple question, “Her spine isn’t severed, is it?” When the doctor responded, “No,” my parents decided that the prognosis wasn’t necessarily set in stone. That’s how things went for a while. My parents would receive some news about my condition and my mother would challenge that particular doctor with a question or two.

I eventually was able to go home and was set up with physical therapy. At that time I was still in a wheelchair. My dad stayed home to care for me, and my mother helped out with some “tough love”. I had to use my slide board to get in and out of bed. I had to wheel myself around when inside, and I had to exercise my legs… a LOT. My parents cared for me and loved me dearly and they simply wanted me to get better. I then moved on to leg braces and a walker, which meant more exercise!

We moved from Phoenix to Ottumwa, Iowa. When I was enrolling for school, the principal suggested that I be put in a special education class to accommodate my needs. Again, my parents challenged what they were told. My mother informed the school that just because my legs didn’t work didn’t mean there was anything wrong with my mental capacity. I was placed in a “regular” kindergarten.

I had some challengesto overcome and I have since mostly recovered. I still have some issues with gait and some muscle weakness. I have traveled the world, hiked mountains, walked the streets of some beautiful cities and have had more wonderful experiences than I could have ever imagined. The only way I could have lived this life was because I had people to advocate for me. When I was too small and too young to understand, I had adults in my life that cared for me enough to see what others couldn’t and ask the questions others wouldn’t. I hope that now, through my involvement with SRNA, I too can be an advocate for others suffering from rare neuroimmune disorders.

~ Kathleen Burns, diagnosed with transverse myelitis at 5 years of age

Advocacy is defined as “The act of pleading or arguing in favor of something, such as a cause, idea, or policy; active support.” Advocacy for individuals and families suffering from rare disorders is crucial to raise awareness and promote timely clinical care, research and development. We look forward to expanding our network of patients, families and researchers actively working with transverse myelitis and related disorders to shape our knowledge and understanding, and, by extension, our care for the patients and their recoveries. If you would like to share your story and be an inspiration to others to advocate for themselves, please email us at [email protected]

We Are All Equal in the Snow

It’s snowing again. This time, though, the road outside my house is passable, obviously, it’s been gritted at some point. Last time I was stuck in the house for three days, as I couldn’t get out.

If I didn’t have such a wonderful carer, I would have real problems. The snow lays thick on our drive, and if he hadn’t been out clearing it all away, there’s no way I could have got out when I did.

I find myself thinking about the problems that able-bodied people are having in getting out and about: I hear their constant grumbles about how careful they have to be in the snow, and how they can’t get to the shops or work easily. This is how it is for the disabled all the time. We have to think about how we’re going to get around from the moment we wake up in the morning to the time we get into bed at night. If I could somehow point this out, maybe we’d have more understanding from those around us?

Perhaps not. People see what they want and expect to see, and most of them are so wrapped up in their own lives they have little time or energy to think about others. I’m as guilty of that as the next person.

But there is a certain pleasure in watching everyone else having to be careful where they put their feet, and being really scared about falling. Somehow, for now, it seems to make us all more equal.

~ Ruth Wood is a regular contributor for SRNA blog. Based in the UK, Ruth was diagnosed with TM in 2006. She now shares her personal stories with SRNA community.

Dog Days by SRNA Board Member Barbara Sattler Featured on the Arizona Daily Star

Dog Days, written by Barbara Sattler, one of SRNA Board Members, has been featured on the Arizona Daily Star!

Dog Days explores relationships between mother- daughter, friends, men and women and dogs and humans. It is a time of crisis for Kristin White. Twenty-five year old Kristin is released from prison after doing time for a crime she did not commit. Kristin is involved with two men. Self-centered Josh who lets her take the rap for his drug deal, and Kelly, a good but judgmental man she meets while still on parole.

Written by a former criminal defense attorney and Superior Court Judge, the book follows Kristin’s journey through the criminal justice system from arrest through sentencing with a focus on her relationship with her lawyer and one of her cell mates.

On parole Kristin struggles to find employment. Sara, a psychic and dog communicator who owns The Dignified Dog -a dog training and day care facility-finally hires her. There she meets Samantha, a smart, sensitive black lab and Theodore, a small brown dog of mixed parentage: they help Kristin understand loyalty and compassion. With the help of Sara, her co-workers and various canines, Kristin starts to grow up and find out what matters in life. Kristin’s growth is tested when Josh is once again responsible for another horrible event in Kristin’s life.

Dog Days is available through Amazon, Kindle and other e-readers. All proceeds from the sale of this book will benefit the Transverse Myelitis Association.

Introduction

Hi! My name is Ruth Wood and in 2006 I was happily sorting out my new life when suddenly everything changed. I’d moved away from Stafford in the UK, where I’d lived for twenty years, to marry my soul mate. We have been friends for years and got married two years earlier.

Because of the move, I gave up my full career life as a singer, performer, singing teacher and coach with my own studio. But I gradually built up a new career, teaching with the Worcester Music Department in schools all over Worcestershire, as well as working at the School of Drama in Birmingham and in a private club. It wasn’t long before I was full time again!

In June of 2006, I was diagnosed with coeliac disease, which is an auto-immune problem resulting in a total intolerance of gluten. I’d been ill all my life, and this explained a lot. Within six weeks I was feeling amazing and beginning to put on weight for the first time!

In September of the same year, I was working in Liverpool on a project involving the drama schools, coaching some girls for a performance of an excerpt from West Side Story. I was enjoying it immensely but began to feel very tired as well as having trouble with my walking. I tried to ignore it, but when I was on the train traveling home I began to feel that there was something very wrong. The day after I returned home I was due to be working at the music school, but I felt too tired and ill to go in. Little was I to know that I was never going to work there again.

Within a week I had severe pain in my left leg, which was beginning to drag. I went to my GP several times, and she sent me for X-rays, thinking it was probably sciatica. Things went from bad to worse, and my husband persuaded me to try a different GP. Unknown to me at the time, Dr. Cheetham specialised in neurological problems, and when he saw me he immediately reacted. After a thorough examination, he told me he was referring me to the Queen Elizabeth hospital in Birmingham for further tests. I knew he suspected something, but he wouldn’t tell me what it was, preferring to wait for confirmation. Within hours I was on a ward waiting for the first of what would be several tests.

My pain and walking got worse until I could no longer lift my legs off the bed. I couldn’t work out what was happening to me, and was terrified it was something terminal. When the results came through, and it was explained to me that I had transverse myelitis, I was actually relieved! I wasn’t going to die.

I was seen by an OT, who asked me what help I would need at home. How was I to know? I’d never been disabled before!

I was in the hospital for nearly a month, after which I was sent for physiotherapy at a local hospital. This consisted of very little more than drinking cups of tea and watching other people do various exercises. After six weeks even this finished.

Because the hospitals had “lost” my notes between Birmingham and Worcestershire, we weren’t visited by any health professionals for over six months. During that time I had another attack, and lost the use of both hands for a time. I was determined this wasn’t going to be permanent, so devised my own exercises to help myself.

Over the next five years, I had another three attacks, one in my back, two more in my neck. I had to give up my career, fight to get my breathing back on track, and accept the fact that my voice no longer worked the way it should.

I wrote a book about my first year as a disabled person, I published a book of poetry; I took up new hobbies and received grants to study Neuro-Linguistic Programming. I joined a new church and found my “centre”, and through it all my husband stayed firm and staunch.

I’ve gone back to work part-time, helping people to realise their dreams and sing to their abilities, which is richly rewarding. I’m singing and reading at my new church, where I have so many new friends. I write for the online TM magazine, take part in the forums on Facebook, and do everything I can to raise awareness of this dreadful condition. I keep up to date with medical research, attending as many conferences as I can. I take part in a creative writing group, am part of an MS exercise group and have discovered toning, which I do twice a week. I’m out of the wheelchair and use a walker, though the pain in my legs, hands and arms is still vicious.

I have now been diagnosed with severe osteoarthritis in both hips, so my exercises are absolutely vital.

Every day I’m thankful I’m alive, and every minute I try to live to the full, in spite of this disablement.

I look forward to sharing more stories with all SRNA members, friends and followers from across the pond!

~ Ruth Wood is a regular contributor for SRNA blog. Based in the UK, Ruth was diagnosed with TM in 2006. She now shares her personal stories with SRNA community. 

Accepting, not embracing our life with Transverse Myelitis: a mom’s point of view

I remember the first few weeks after my daughter, Erica, was diagnosed with Transverse Myelitis. I thought I was the only person in the world going through this experience. Inflammation, can’t an antibiotic take care of that?  If only I had someone to sit down with me and explain the life-altering change we were about to go through. This feeling, even nearly 3 years later, is so isolating. That is why it is so important for me to reach out to other families.  I have learned so much from other parents and adults living with TM. I have also made wonderful, lifelong friends. I relate to them far more than with my childhood friends.

One night, about a week into our hospital stay of six long weeks, I had to get out of the room.  I couldn’t look anymore at the wheelchair staring at me. It was a reality check for me every morning. I had settled Erica for the night and asked the nurses to check on her. Before leaving the room, I asked her if I could bring her anything from downstairs. I was going for a Coke. She looked at me and said, “yeah, Mom, can you bring me a new pair of legs?” Wow, the question knocked the breath of me. I went and cried for what seemed like hours over that request. I made a decision at that moment, to find some way to move forward with what was handed to us. I went back upstairs and told her that I found this really bad pair of legs in the waiting area, but they were extremely hairy and had ugly shoes. That comment made her smile and we laughed and cried together. I didn’t know what else to do but joke. My 12 year old daughter who lay there paralyzed from the waist down wanted new legs. She was an enthusiastic dancer and wanted to try out for cheerleading. How did this happen and why?

I wanted to share that story because I remember thinking how do we get through this? Time and comfort from other parents and others living with TM. That is what has helped me. I finally met the point of acceptance sometime this past summer. I convinced Erica to go to a day sports camp and after begging and pleading, she went. I walked into the gym that first day without her knowledge and I saw her smiling. It was a smile I had not seen in over 2 years. She was playing basketball, which was a favorite pastime for her before TM.  I knew she had accepted life and I had to as well.

I met a family our first year at SRNA camp. I was amazed at how they acted, just happy. I, of course, was so angry at life and what we had lost. That was October 2011. This past summer at camp, we were back with that same family and the mom commented on how much I had changed. She was glad that I wasn’t angry anymore and really saw a difference in me and my whole family.  I don’t embrace what has happened, and trust me I have my moments, my days, even my weeks.  I still get mad when my daughter can’t just jump in the car and go out with friends. When even a trip to the mall is such a big event or seeing her sitting on a towel at the beach instead of acting like a teen should, I cry.

When I started writing this blog, I had no idea what I wanted to say. Erica lost complete function in less than 30 minutes and our lives changed forever.  I wanted to share how we have moved forward.  To have acceptance of our life changes has been freeing. I will never embrace what my daughter has had to miss out on, and I grieve for her loss. I do feel as if she and others have been completely robbed of so many things. However, this has opened so many doors for us. Erica is now in her first year playing basketball and can’t wait to go to college. She talks of her future and I know that she will accomplish all the goals she sets. From the beginning we have had the attitude of “I can do everything that I did before, just differently.” That is an attitude that, as a mother, is hard to keep sometimes.

I still don’t have answers to how and why and I know I will never get those. I do know that having TM has put us on another path in life.  I can’t tell her anymore to work harder and she can try out for cheerleading next year or that she will dance at next year’s recital, but I can tell her that life holds more for her than that.

 ~ Jamie McDaniel, mom of 3, oldest diagnosed with TM at 12 years of age

The Barrel of Monkeys

I’m an educated person. I thought that I had life and illness figured out. I read professional articles with multi-syllable words, written by people who are the smartest of the smart. In 1991 I completed my doctoral dissertation in a clinical psychology program in Colorado. My topic was the marital relationships of parents who have chronically ill (asthmatic) kids, compared to parents whose children are relatively healthy. I learned a lot – primarily that illness sends its tentacles into all aspects of an individual and their family’s life. Pain and disease affect the relationships between parents and children, husbands and wives, brothers and sisters, coworkers, friends, the list goes on. I had chosen to focus on emotional aspects of physical illness for my research because as a pre-adolescent my life had been affected by what turned out to be an orthopedic disorder I had been born with. My last vertebrae (L5) was misshapen – resulting in a weakness in that part of my spine. The problem was easily fixed with surgery, but illness and injury being what they are, especially for a 12 year old, left me with a lot of stress, depression, and a lifetime of episodes of resenting those ‘normal’ people who did not have back problems.

Oh, if I could have those innocent and carefree days back again. You might say, “Are you crazy, lady, you just said that the congenital deformity in your spine was pretty stressful. Well…. that wasn’t anything compared to the ‘barrel of monkeys’ that Transverse Myelitis turned out to be, forty years later. In the winter of 2011 I contracted Shingles. In case you don’t know what Shingles are, I hope that you and anybody you care about never get to meet that condition up close and personal. If you had chicken pox as a little kid, you contracted a version of the herpes virus. The virus lives forever in your body, and usually its no big deal. However, for one in four people, once they hit middle age or later, they get a re-run of the virus. Combine the flu with the worst ‘road rash’ you ever got from falling off of your bike, and that is Shingles. Rumor has it that only twice in thirty years did David Letterman take off ill for any length of time from his TV show – once because surgeons cracked his chest open to do a quadruple bypass, and another time when he had Shingles. Wearing clothes hurts when you have Shingles.

I was recuperating from the Shingles – starting to feel human again, and able to wear something other than yoga wear, when I noticed that I had been having weird back pain that I am not used to (and I am a relative expert on the many types of back pain), and a worsening of the sort of ‘restless legs’ that has been part of my old back injury. All of a sudden, March 15, 2012, when working from home, writing psychological evaluation reports, admiring each clever ‘turn of phrase’ I turned out, I realized that I could not feel my legs. I’m used to a couple of numb patches on my legs, but this was my entire right leg, and part of the left. Again, I chalked it up to simply fighting off the Shingles virus. It wasn’t.

About two months later, after a trip to an emergency room, four MRI’s, a colonoscopy, and a spinal tap, I had an answer. My neurologist, Paul Genilo, MD (he’s a genius, and pretty easy on the eyes) diagnosed Transverse Myelitis from #3 MRI. I had a lesion on my spine from T8 to T10. The day I got the diagnosis over the phone, I was in my office, doing some miscellaneous business maintenance since an appointment had no-showed. I took the extra time after I got off the phone with Dr. Genilo to look up Transverse Myelitis on the Internet, and email my chiropractor. She immediately emailed back, telling me to not look up TM online. Too late – what I had found out reduced me to tears. Wheelchairs, and ventilators, and going on disability because of a virus that took a chunk out of my spine? I’m vain and professional enough that I sucked it up, instead of worrying about how I was going to get tears and melted mascara out of my linen blend skirt. I had patients to see, a life to lead, and I could not let this thing beat me.

I spent the next several months learning to deal with wobbly legs, an appetite that had vanished, and assorted abrupt changes in how my body worked. Gradually I got stronger, and now I marvel that a year ago (I’m writing this in April 2012) I had to have help managing the stairs in my bi-level home, I couldn’t wear my beloved high heels, and I had to take a break from Jazzercise. Over time it gradually dawned on me that I had dodged a major bullet. Many other TMers I have spoken to in the on line groups are not able to walk, or work, or return to anything close to their TM lives. I used wheelchairs only when I was discharged following medical tests, and one of the ‘weak’ days when I couldn’t manage Wal-Mart or Sam’s Club store shopping. (Be kind to the people you meet in the store using those wretched store wheelchairs – the chairs are not easy to operate.) The only time I missed work was to have medical tests run (medical schedulers are evil people – if I tell them that I always take Friday afternoons off, or my husband is off work on Mondays and Tuesdays to drive me – they will schedule some invasive test on a Thursday morning.) And I resumed Jazzercise after a few months – with a few modifications such as no hopping with both legs together – too much jarring up my spine.

In March 2012, at my one-year check up with neurologist Dr. Genilo, he told me that he had not shared something with me last year, when I got diagnosed. Apparently, my TM lesion was so big and bad, that I should not have been walking. I shouldn’t have had the ability to walk. He wisely did not share that with me in 2011, when I was freshly ill. Oftentimes we live up to other people’s expectations. If someone had told me I should not be able to walk, maybe I would have (unconsciously) complied by not being able to walk. Since nobody told me how sick I was supposed to be, I just carried on with business as usual. Not knowing is sometimes a very good thing.

Last October I had the chance to deliver the message at my church (College Hill United Methodist Church in Wichita KS), when my pastor, Kent Little, was going to be gone that Sunday. I took it as an opportunity to tell them what they meant to me, and what my journey had taught me. Very few of them knew about my TM, mainly because I am an odd combination of shy, vain, and block-headed (stubborn). The biggest part of what I shared with my message to the congregation was a spiritual insight I probably would not have experienced, had I not been struck with TM. I, like most people around me, have this idea that ‘what goes around, comes around’ is the way of the world. That is, if I do right, eat my vegetables, give to charity, don’t cheat on tests, etc., I should be rewarded with success, good health forever, happiness, and never ever have pain until maybe the moment I die. That means that those who do not do right, spend recklessly, and park in handicapped spots when no one is looking will be punished with illness, despair, and loneliness. Yeah, right. Instead, none of us truly deserve the blessings we get from the universe, and often we do not deserve the tragedy that falls into our lives. Instead, to be mature and kind, we should live in an attitude of gratitude.

What this has to do with TM is this, from spending time supporting others online, and soaking up the support from other TMers online, I had learned that comparing my TM condition to others with TM (and others who are ‘normal’) was disrespectful, and violated what I take to be one of the great truths of this world. Again, virtue does not insure a disease-free, trouble-free life, and being an evil person does not mean that one will eventually get their comeuppance. I had developed ‘survivor guilt’ because I did not feel worthy to have been spared the worst of what TM can do to us. I had to deal with the fact that I had done nothing, absolutely nothing, to earn the blessing of having been lightly touched by this disease. Trouble befalls all of us, and blessings also are not what we earn, but what are granted to us, no strings attached. Maybe this sounds weird and incongruous (in a slightly politically incongruous way) but in preparing for the talk I gave, I came across a quote about being selfish, and being worthy that came to mean a lot to me, from founding father Samuel Adams,

“It is not infrequent to hear men declaim loudly upon liberty, who, if we may judge by the whole tenor of their actions, mean nothing else by it but their own liberty, — to oppress without control or the restraint of laws all who are poorer or weaker than themselves. It is not, I say, infrequent to see such instances, though at the same time I esteem it a justice due to my country to say that it is not without shining examples of the contrary kind; — examples of men of a distinguished attachment to this same liberty I have been describing; whom no hopes could draw, no terrors could drive, from steadily pursuing, in their sphere, the true interests of their country; whose fidelity has been tried in the nicest and most tender manner, and has been ever firm and unshaken.
The sum of all is, if we would most truly enjoy this gift of Heaven, let us become a virtuous people.”

Essay published in The Advertiser (1748), later reprinted in The Life and Public Service of Samuel Adams, Volume 1, by William Vincent Wells; Little, Brown, and Company; Boston, 1865.

What that means to me is this, once you’ve been given a blessing, or gift from the universe that you know you did nothing to earn, its up to you to then become the virtuous sort of person who could be considered ‘deserving’. Kindness, civility, fairness, and thoughtfulness – I’m still struggling to show all these characteristics, and often I fall short. I’ve learned some significant lessons from getting TM than I could not have gotten in 11 years of higher education. I would have liked to have learned all this from a book, but that wasn’t how it was meant to be. I had to live it, and I still am.

– Molly Allen, Wichita, Kansas