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

IMG_1264

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?

IMG_3097 copyI 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 the TMA 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

 ~ 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

The Beginning

It is hard to believe that we are already in the last quarter of 2012.  In our part of the U.S., the weather has turned much colder, it’s wet, and we are chilled to the bones, bracing ourselves for a long, hard winter!  The close of 2012 will mark the end of a bittersweet year for me.  It has been so full of ups and downs in this one short period of time that I sometimes have to take a step back and collect myself!  The year was filled with what seemed, at times, to be endless hours in doctor’s offices and in physical therapy sessions, most of which required extended time away from home and the rest of the family.  As a family, we were able to gather with many other families to learn and celebrate our children’s unique circumstances at TMA Family camp.  Most notably for me, as a mom of a young child with ADEM/TM, I connected for the first time with another mom of a child with Transverse Myelitis.

Big deal, right?  Huge deal!  This December will be the five-year anniversary of when my son was diagnosed with ADEM/TM.  Five years of trying to understand what happened, and continues to happen, to my child has taken its toll.  I was trying to work full-time, manage a family of five, “research” on my own all of these different things that doctors and therapists were throwing at me as treatment options, worrying about my son and how he was getting around school safely, wondering what the headaches and other aches and pains he complained about where they were coming from, what we were going to do when he changed schools, trying to afford a new pair of shoes every six weeks to fit bracing…it was exhausting and lonely.  Don’t get me wrong – I have tremendous friends and family that are a huge support, but I still felt stranded on this island of a rare diagnosis that nobody, not even the physicians in our area, understood how to treat my son.  I was so tired of feeling like I had to explain why my son wasn’t “potty-trained” by now and can’t be, why he is considered paraplegic but yet he was never involved in an accident; telling people, “no, he doesn’t have cerebral palsy”, and preparing for the look of shock on their faces and prepping for a potential argument when I would tell them what caused his illness, resulting in his paralysis/diagnosis.  I talked to Liz, another mom with a child who suffers from TM, and throughout our conversation, I felt a weight being lifted.  After our conversation was done, I sobbed.  I was so happy that there was another person that I could relate to, that my son could relate to, and heartbroken at the same time that another family and child had to experience the ramifications of a TM diagnosis, as well.  She understood and experienced the same frustrations and daily struggles, but still had that hope and determination that I did for my son.  We were able to meet in person this past spring and our boys became fast friends.  I will never forget my son’s excitement and his huge smile when he said, “Mom!  He walks just like me!!”  We were no longer fighting through this “alone”.

Through my friendship with Liz, I’ve become more aware of the TMA and was reminded of the Family Camp.  We were able to attend this year and it was an incredible experience my family still talks about on a weekly basis.  At camp, I was able to meet other tremendous moms, who I am blessed to be able to call friends, and who have a passion to learn, create awareness, and ultimately see to it that all kids with a TM/ADEM/NMO/ON diagnosis grow up to be happy, healthy, adults.  It goes without saying that there are challenges in child-rearing, but a rare diagnosis complicates challenges even further and throws in its own unique hurdles to overcome.  As moms, we are typically by nature, fierce and relentless when it comes to our children and meet the challenges head on, but add in the extra complications of a rare diagnosis, and raising a child can be all the more daunting.  I truly believe that collectively we can be an even bigger force to reckon with when the challenges of TM come upon our families.  By sharing what we’ve learned and supporting each other through the difficult times and celebrating the good times, we can make sure that no child, no mom, no family who has suddenly found themselves with a diagnosis that they’ve never heard of, feel like they are stranded on an island alone!

So, how do we combine our efforts and reach out to those that need another mom to talk to, bounce ideas off of, find a reference for a physician, or ask the questions about where to find supplies, what to do when your child is struggling or when we, ourselves, are struggling?

First, become involved in the TMA Kids.  We are working towards some tremendous efforts to raise awareness and funds for families to attend camp and other educational opportunities, for physicians to be specifically trained in pediatric demyelinating disorders, and eventually to help support families financially when the burden of extra equipment and medical expenses become more than they can bear on their own.  We are in our infancy but already beginning to see our efforts come to fruition and are so hopeful of what else we can do for our kids.  You’ll also be able to network with a great group of moms, who share and understand your passion when it comes to our children’s diagnoses.

Secondly, let’s meet here on the blog on a monthly basis.  Let’s create a conversation where we can share our difficult and our celebratory times, ask the questions we can’t ask our other “mom friends” – let’s learn from each other, educate ourselves, and be a support for one another.  Our hope is to create a monthly blog series, dedicated to the moms (and dads and primary caregivers, you’re not excluded from this!) perspective.  We’ll hear from moms that have been dealing with TM and its nuances for 10, 15 and maybe even only 1 year.  I’ve recently seen a photo of a teenager with TM, ready to head to a typical teen school event – what struck me about this photo was the smile in the eyes of this child – I have no doubt the mom had a lot to do with that smile!  I want to know how she’s made it through, how she managed to keep her child’s eyes so bright even if her own held tears, anger, or frustration.

What about you?  What do you want to hear from other TM moms about or what do you want to talk about as it relates to caring for your child with this diagnosis?  The possibilities are endless:

  1. Restorative therapies; what is it?  Where do we get it?  Why does it work?
  2. What cathing or toileting supplies do you use?  What works for your child?  Where do you find them?
  3. How do you handle the physician that thinks they know your child better than you?
  4. What all can Botox do? Is it okay?
  5. How do you respond to the stranger who asks very personal details or asks “what’s wrong with him/her”?
  6. What did your child say or do that made you realize you really are doing the right thing for him/her?
  7. Navigating school; the IEP or 504 plan; communicating with other students and teachers about your child’s specific capabilities and needs.
  8. What’s the difference between spasticity and tone? Why when it got cold did my child suddenly become so stiff?
  9. How many options are there really when it comes to bracing?
  10. Where on earth do you find shoes that will fit bracing or won’t wear holes within two weeks?
  11. Your child took their first steps after you were told they never would – we want to know and celebrate!
  12. How do I keep positive when all I want to do is melt into a puddle?  After all, my child is watching…
  13. What options should I consider on my child’s wheelchair?
  14. How do I get my child to another part of the country to see a specialist?
  15. Who and where are the “specialists”?
  16. Adaptive sports – how do I get my child involved?

…and the list goes on…

The comments section is available and we’d love to hear what you want to see in this space. If you have your experience or story or question you want to share, let us know at tmakids@myelitis.org!  Even if you think it is the same as everyone else’s – I can guarantee you it isn’t and if you have the potential to touch or teach just one other mom or child…it could be the one that makes all the difference!

Rebecca~ Rebecca Whitney, mom of 3, youngest diagnosed with ADEM/TM at 4 months of age