This week I have another interview for you. I write a lot on this site about overcoming the internal resistance that a writer faces and Kristen Elisabeth Steele exemplifies this to the utmost degree. In the later part of 2016 she was diagnosed with transverse myelitis, multiple sclerosis, and optic neuritis all within a few short months of each other. Faced with despair and the very stripping of her own identity, she poured her pain and her triumphs into a blog she started called Hope4Life180.com. Deeply personal, self-effacing,and funny, her blog is a raw look into the world of a mother, a teacher, a writer, and a person living with a debilitating condition. On top of the blog, she is also a published author of several childrens’ books which you can find on Amazon and createspace.com. You can find the links to buy her books at the end of this article. This article has been transcribed to text from a telephone interview.
Donald Huffman: Hi Kristen, thanks for chatting with me. So, how many years did you teach?
Kristen Steele: I taught for 27 years. I taught special education for 16 years, and Kindergarten for 9 before moving back up to New Hampshire where I’m originally from and starting my Discovery Center, which is like a small children’s museum. I realized though that a steady income would help me to do more with the center, so I ended teaching special ed here for an additional 3 years.
So do you own the museum? How long have you had that?
Yes. I’ve had it for about 3 and a half years.
Oh, okay. I didn’t know that. So, you were diagnosed with several severe and chronic illnesses in a short amount of time. In September you were diagnosed with transverse myelitis. In December you were diagnosed with MS and only one month later you were diagnosed with optic neuritis. What was your initial reaction to the news?
I had several different reactions. Initially with the Transverse Myelitis it was a complete shock! Transverse Myelitis is an inflammation on the spinal cord that causes nerve damage. One day I was completely healthy and very active, running around everywhere and two days later I was losing feeling from the waist down.
Did you say two days?
Yes. It started to on a Wednesday. My feet were tingling when I took off my usually very comfortable shoes at the end of the day and I thought, ‘That’s strange.’ It kept progressing up my legs throughout the next two days. I kept telling myself it was probably just a pinched nerve and it would eventually go away. By Saturday I was having trouble getting around, but I still tried to ignore it. That evening I was doing a crafting class that with some friends when I put my hands on my thighs and realized I couldn’t completely feel my hands. Then I began to really worry. I went to the local hospital that night. They didn’t know what it was so they just sent me home. I knew something was wrong so I drove an hour and a half to Dartmouth Hitchcock Medical Center which is a bigger, teaching hospital. They immediately did an MRI and admitted me. They diagnosed me with Transverse Myelitis and I was in the hospital for 5 days. They gave me high-dose steroids through an IV and slowly I regained a lot of sensation in my legs, but not completely. I had just started a new job at a new school district and I thought, ‘I’ve got to get back to work!’ I don’t think I really understood the severity of it initially. Some people with the Transverse Myelitis go straight to wheelchairs for the rest of their lives, so from that perspective I felt pretty fortunate that I could walk, even though it was with a walker at that point. Having some mobility meant there was a better chance of me slowly getting better. So, after the initial shock of everything, I was tough and stoic. I keep thinking I just need to push through this, but it wasn’t working. I wasn’t getting better. I was a very fatigued and I had a lot of brain fog. I thought ‘What the heck is going on?’ I was suspicious that something else was happening, so when they diagnosed me with MS, I was initially relieved. I think my reaction surprised the doctors (laughs). I was just so glad to know that there was a real reason why I wasn’t getting better. Eventually after the holidays were over and the lights came down, and it wasn’t so pretty, the reality of it began to sink in. Now it was just cold and winter and I was like, ‘Oh crap. I’ve got MS.’ Then I started having blurred vision and headaches, leading to another hospital stay and the diagnosis of Optic Neuritis (inflammation of the Optic Nerve). That’s when I had what I call my dark days. It was dark and depressing and I kept thinking, ‘How am I going to survive if this is the way I’m going to feel all the time.’ I was really struggling to accept my situation and wanting to be the old me again. I started walking in the afternoons using a jogging stroller for support and listening to audio books about dealing with difficult situations because I couldn’t read long enough to get anything from print books. The books were the beginning of me starting to accept my circumstances. There were definite stages, though. At first it was disbelief and shock and then it was relief and then great depression then slowly acceptance. Once I hit acceptance, I was like, “Alright, time to pull up your big girl panties and roll up your sleeves and…you know, let’s do this.’
I like that you were relieved that you had M.S. (laughs) Kristen, have you become, kind of, a more spiritual person or have you always been?
I always have been in one format or another to different degrees…
It sounds like maybe this made you dive in?
Well, again I’ve always had a presence of faith in my life, but this time it was more about really putting it into action. I had to practice what I preached a bit more. I’ve had a lot of difficult things I’ve had to deal with in my life, so I’ve learned that even though you have your moments of struggle, you still have to move forward. I guess I’ve always had a kind of fighter perspective. This time it was more about learning you can’t be at war with yourself all the time or you’re going to be an unhappy person. Not accepting my conditions made me unhappy and I was battling myself. Throughout this whole thing there was a measure of peace that I had to accept, cultivate and appreciate. I felt it deeper than I have at other times in my life, perhaps because I really had no other option. The only other option was to be negative, and that simply is just so not me, so it wasn’t acceptable.
You state in your blog that you begin to write about your experiences as a way to cope with all the new losses. Has writing taken on any new meaning or dimension since your diagnosis or has your relationship to writing changed at all?
Very much so. I have always enjoyed writing. I’ve always seen myself writing in the “future”, and I guess now the future is here (laughs). Getting sick has sort of given me the opportunity to do something that I’ve always wanted to do. I started 3 or 4 blogs on occasions in the past, but I just never found my voice for them or stayed with them. This time my blog started off specifically as a way to cope and to process life. I thought, ‘You know what? I’m learning lessons out of all this, and if I can encourage anybody else, then that’s something that I want to share.’ There is often something that I will be struggling with and I’ll think, ‘Okay so here’s the hook for this week for the blog. It will be interesting to see how this turns out.’ I just can’t let myself stay negative. It’s okay to be there for a while, but I can’t just wallow in it. I have a friend that has MS and she’s starting to let it define her. I love her dearly, but I don’t want to be that way. I want to grow through this experience and hopefully help and encourage others.’
There’s something kind of empowering about that formula of going through the tough weeks and then turning it into material for your blog. So you talk about writing and how you’d like do it more once the future comes and now the future is here, so do you think, with the diagnosis, that everything happens for a reason?
That’s a really good question. This is something that I really had to think about. At a different time in my life, I would have said yes. I still lean towards that, but I have a friend whose five-year-old son was diagnosed with cancer last year. She has a very strong faith, but she’s the first person to say that she hates that expression. At this point in their life she can’t see a reason why God would allow a 5 year old kid to get sick with cancer. I see where she’s coming from, so I stop short of saying everything happens for a reason. Still, I kind of have a suspicion that maybe it does. I believe there may very well be a bigger perspective that I cannot see. At the very least, I do believe that good can come out of even really bad situations. You know, in the midst of this struggle there is positive to be found if we look for it.
The good’s always available.
Exactly. It doesn’t take away the ‘ick.’ I mean it sucks that he’s sick and it sucks that I’m sick, but there’s also good to be found if I l look for it. So now I kind of feel like it’s my mission to look for the good and find it and try to make it grow.
What direction do you see your writing or your blog taking? Do you have a hint about which way the creative winds are blowing you or is it a day by day journey…
I have two very different but two very passionate directions that I see it taking. I feel like I need to do the blog for me and for others, hopefully as an outreach or just to encourage other people. That’s sort of my heart mission, but professionally I want to focus on writing my children’s book series featuring Purple Moose. Purple Moose is kind of like a three-dimensional version of Flat Stanley that goes from place to place. The first book The Airport Adventures of Purple Moose was created from a return trip I made from New Hampshire to Ohio, where I lived at the time. I bought the stuffed moose the morning I left as a memento from NH to take back to my kindergarten students (the school color was purple). I started taken pictures of him at the airport and continued throughout the trip so they could see what it was like to go on a plane trip. They loved it! The Purple Moose books were born! After that, Purple Moose became a kind of class mascot. I started writing stories to give the kids a chance to experience things they might not have been able to otherwise. I recently found the original film pictures from that first trip, which motivated me to scan them and make The Airport Adventures of Purple Moose into a real book!
Is that the first book you’ve published?
Yes it is. It’s really exciting for me to see it come into reality! I actually have two books available now, The Airport Adventures of Purple Moose and Purple Moose gets a Puppy. They are both for sale on Createspace and on Amazon. The third book Purple Moose learns about Butterflies (the first in the Science Series) should be available soon.
You just got Purple Moose stories in you.
Yeah, it’s a way for me to still reach kids and it’s something I can still do. I plan to write books about science, nature and world themes to help get kids excited about learning. I’m actually even kicking around the idea of doing a blog that Purple Moose writes that would tell about the adventures between the books and focusing on teaching the importance of play, being out in nature and unplugging.
So, how often do you write in a given week?
I’d like to say I write every day, but I know that’s not true. I would say probably at least 5 days a week. Since I’ve made the big push for the Purple Moose books, the blog is taking a backseat so I’m feeling the need to get back to the blog again. It’s tricky trying to juggle the two, but I am determined to find a way.
I’m actually doing the same thing. I’m writing a book. It’s kind of my autobiography and then I’m doing the blog. The blog’s about writing and spirituality and the book’s this autobiography, so I’m kind of doing the same thing, with balancing…and it’s tough, you know, it’s a lot of work.
Right, and that’s something I don’t think I realized, just how much work and how much time writing takes. Somebody recently asked me if I’d done something and my response was, ‘I haven’t had a chance to do it. I’ve been so busy.’ I thought to myself, ‘I’m not working. I’m at home, how can I say I’m busy?’ but, you know, between the blog and writing the Purple Moose books and everyday life, I really hadn’t had the time. I had no idea that when you seriously pursue it how much time it really takes. When you put a serious effort into writing, it really is easy for it to take over all your time.
You sing, you act, is there anything else you do creatively? I think you mentioned in one of your blog posts you play the guitar.
I do, I play guitar. I dabble with the piano. My mom is a piano teacher and I wish I was better at it but I resisted her instruction when I was younger (laughs). I also teach theatre classes for kids.
That’s an acting class?
Yeah, we put on kid based productions. The kids make much of the set and many of the costumes themselves. I really want the shows to be kid driven. I usually write the scripts myself, so I feel like the kids can memorize it easily and to make it an appropriate length for the kids to do. I’ve done at least one or two shows a year during the time I’ve been here in NH. I didn’t do anything last fall though, because I just physically couldn’t, but I had several kids that were like, ‘Please, please, please let’s do something this summer. We just did Where the Wild Things Are and a version of Really Rosie which is based on several Maurice Sendak stories with Carole King music that was originally released in the seventies.
I’ve never heard of it.
So, what kind of obstacles have come up with your love of arts and expression because of the new diagnosis?
One of the big ones is fatigue and my not being able to put in the same amount of effort as I used to. Normally I would have done a weeklong camp, but this time we did three and a half days. I was exhausted at the end, but adrenaline carried me through. So fatigue is a big factor, but another one is the stupid crutches. I can walk without them, but I look like a penguin and it’s slow. I can get by with one crutch for shorter distances. Using the two arm cuff crutches allows me to move quickly, walk further and really regain a great deal of mobility, but they also can be a pain. They also don’t really fit in typical theatre productions, so my ability to be included in most shows has kind of come to an end. That’s been very difficult for me to accept. I thought I’d accepted it but…it’s hard. I‘m sure I’ll still go to see the shows at the local summer stock theatre this summer because I enjoy it too much, but I’m really struggling with letting go of being a part of them like I was in years past.
It sounds to me like you just don’t stop. (laughs)
I don’t. Well, I try not to (laughs).
You just keep going. It’s amazing.
I have moments when I do stop because my body makes me stop, but I guess I need to feel productive. I don’t like just sitting and not doing anything unless that’s all I can do for the day. But string too many of those days together and I start to go a little stir crazy.
Me too. You write very candidly in your blog about some of the tremendous losses you’ve had as a result of the diagnoses like the loss of a job that you love, impaired mobility, a loss of confidence and you have an article where you talk about being unrecognizable to your old students and faculty because of some of the physical changes that resulted from it, and I get a sense from reading your blog of a woman whose learning these little lessons every day and coming to terms with the fact that being disabled doesn’t necessarily have a whole lot of influence over someone’s true identity and joy. I feel like that’s kind of the vibe I get from reading your blog. Is that accurate?
“Never, never, never give up.”
What’s the biggest thing that you’ve learned in these last eight months or nine months?
Another hard question just because…to narrow it down is hard. I would say a combination of patience (which I’ve never been particularly good at) and just not giving up. That’s been something I’ve really held on to through this whole experience. I have a necklace I got from my son last Christmas that has two parts. One simply says ‘Be’ and the other one says ‘kind, positive, happy, strong, true, compassionate, thankful, respectful’. It was a perfect gift! I have combined that necklace with one I got from my mom a couple years ago that says “Never, never, never give up” by Winston Churchill. Together they are the perfect life mission for me right now. It reminds me of the importance of combining all of those things. To not give up and to continue to be kind, positive, happy, strong, true, compassionate, thankful, respectful. It helps me be hopeful and have hope for the future. Just because life is different and not what you expected doesn’t mean it can’t be good.
Well, I really liked what you said about realizing that not accepting your situations is like being at war with yourself.
Right, it’s so true.
So, what would you say to a person who has just been diagnosed with a similar disability whose life’s about to take the same sort of drastic turn that your life has?
Two things. The first thing is you have to let yourself grieve. I’ve been reminded of that recently. I’m trying to move forward and make plans, but life doesn’t always go along with them. I’ve decided to sell my house because I think it would help me to downsize, and it would give me a financial cushion while I figure out a way to make a living in my new body. But the house hasn’t been getting much activity. It can be a slow market this far north, and this is a large house. I’ve been very frustrated and getting very discouraged about it, even though I try hard to stay positive. I finally came to the realization that I have to let myself grieve. I can’t expect to stay positive 100% of the time. There are going to be down days. As I struggled with this, I thought, ‘How am I going to make a hopeful blog post out of this? I don’t have the happy ending.’ (laughs) I thought, ‘Well, perhaps the lesson is that some days you have to allow yourself to cry. You can be frustrated. You got to lean into it and acknowledge it and accept it. So, I guess I would tell someone who has just gotten sick to allow yourself to grieve, to allow yourself to experience the negative, but just don’t stay there. You’ve got to keep moving forward, you’ve got to keep looking for the good and finding new ways to bring yourself joy.
It just going to plain suck some days but don’t stay there.
You have a beautiful story on your blog about performing in a play recently and incorporating your cane into part of the act. Normally you would use two canes to walk and you write about learning that you could use the normal sort of theatrical gestures of your arms that you would expect in a play to help you balance with only using one cane. At the end of the article you speak of how feeling invisible had been changed to a good thing, that you had blended into the play with the rest of the actors. Could you say a little bit about what that whole experience was like?
It was at first very intimidating because I didn’t want to stand out. But I also knew that this is me right now. It was a musical revue so I only had to sing, but I did have to get on stage and stand there. I really didn’t want to do it with the canes. My mom actually got to play the piano for the song that I was singing and so I got to practice with her. I was able to practice using a theatrical (dance) cane with white tips on either end so it had the potential to look like prop. I practiced looking normal and using my arms for balance and the cane so it might look as if it was just being part of the act. After the last show somebody saw me out side with my real canes and said to me, ‘I guess you really did need that cane. I wasn’t sure if it was part of the act or not.’ I was so excited that I had been successful! That’s why I like being someplace where nobody knows me. They don’t know who I used to be. To them, I’m just another person with canes. I can become invisible in a good way and that’s sort of a relief.
When you’re in a new place, you are just who you are in that moment. You don’t have to deal with what other people know about you from the past and reconcile that for them…
You mentioned the acting class for the kids. Do you have anything else on the horizon, whether it’s theater…you mentioned the book, anything like that?
Continuing doing all of the above. I want to keep writing the Purple Moose books. I’d like to feature some local things with the books since he’s from New Hampshire like Purple Moose learns about making Maple Syrup. We have a neighbor that has dog sleds so I think that would be a fun one too. Another goal is when I hit the one year anniversary of getting sick this fall, I’d like to take many of the blog posts from my site and weave them together as a book. I also promised the kids this summer we would do a production of Lion Witch and the Wardrobe in the fall, so hopefully that will happen as well.
Last question. With the change of the political climate and the uncertainty around healthcare these days, what would you say is the option for the concerned individual to take?
A good question. I am still trying to figure that out. I did write a letter to send to the members of Congress, but I have not mailed them yet. I’d rather do it as an actual letter as opposed to an email because I think it has a better chance of being seen, even though it will probably still be discarded.
It kinda sticks out a little bit.
Yes, I’d like to write and just say, ‘Don’t forget that behind all these policies are real people and lives. Imagine these are your own children, or family, or friends facing these circumstances and potentially not having healthcare affordable and available to them.’ I’m just trying to hopefully elicit compassion and empathy and maybe help them think from a different perspective.
Humanize the issue.
Thank you very much Kristen. I want to say that I really appreciate reading your blog and it sounds like you do about three times more than the average twenty year old with nothing the matter with them physically.
Well, thank you. I appreciate that.
I’d like to once more thank Kristen Steele for chatting with me. You can find her blog here at hope4life180.com. And don’t forget to check out her Purple Moose books on create space.com and Amazon!
- The Airport Adventures of Purple Moose by Kristen E. Steele (createspace.com)
- The Airport Adventures of Purple Moose by Kristen E. Steele (Amazon)
- Purple Moose gets a Puppy by Kristen E. Steele (createspace.com)
- Purple Moose gets a Puppy by Kristen E. Steele (Amazon)
- Purple Moose Learns About Butterflies by Kristen E. Steele (createspace.com)
- Purple Moose Learns About Butterflies by Kristen E. Steele (Amazon)